Retina International General Assembly 2018 - Auckland, New ZealandThursday, February 8th, 2018
Location: University of Auckland Business School
Owen G Glenn Building, 12 Grafton Road, Auckland, 1010
Room:
Decima Glenn Room, Level 3
Start:
09.00 a.m. end: 05.00 p.m.

APPENDIX 03-1
3.1 President’s, MC and CEO reports July 2016 – January
2018
Page

Topic

pg.

3

1

Introduction

pg.

3

2

Objectives and division of labour

pg.

4

3

Term of office report July 2016 – January
2018

pg.

4

3.1

Introduction

pg.
pg.
pg.
pg.

4
4
5
9

3.2
3.2.1
3.2.2
3.2.3

Membership, Governance and Constitution
General Information
Membership Sub-Committee report
Governance report

pg.
pg.
pg.
pg.

9
9
10
10

3.3
3.3.1
3.3.2
3.3.3

Research
General activities
Patient reported outcome measures
ERN European Reference Network for Rare Eyediseases

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pg.
pg.
pg.
pg.
pg.

11
12
12
12
13

3.4
3.4.1
3.4.2
3.4.3
3.4.4

Communication and Marketing
World Retina Day 2016 and 2017
Retina International Website
Genetic Tool Kit
AMD Tool Kit

pg.
pg.
pg.
pg.
pg.

13
13
13
14
15

3.5
3.5.1
3.5.2
3.5.3
3.5.4

Retina International Conferences
Taipei (Taiwan) 2016
Auckland (New Zealand) 2018
Reykjavík (Iceland) 2020
Future conferences

pg.

15

3.6

Youth

pg.
pg.
pg.
pg.
pg.

16
16
17
17
18

3.7
3.7.1
3.7.2
3.7.3
3.7.4

Retina International Operations
Funding and accounts
Assistant
Retina International Office, Dublin
Travel activities of the president and CEO

pg.

19

3.8

Support of research applications

pg.

20

3.9

Retina Europe

pg.

20

3.10

Ibero-Latinoamericano Retina

pg.

20

3.11

AMD Alliance

pg.

21

3.12

Retina International Scientific and Medical
Advisory Board (SMAB)

pg.

21

4

Reflections for the future

pg.

24

5

Acknowledgements

Retina International, GA 2018, Auckland (New Zealand)
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1.

Introduction

This report covers the activities of Retina International from July 2016 toJanuary 2018. The General Assembly (GA) in Taipei elected the following
officers to the Management Committee (MC):
Christina Fasser (President)
Fraser Alexander (New Zealand)
Kristin Halldor Einarsson (Iceland)
Michael Laengsfeld (Germany)
Claudette Medefindt (South Africa)
Abdullah M. Yusuf (Pakistan)
Caisa Ramshage (Sweden)
Kin Ping Tsang (Hong Kong)
This report covers the activities of the Retina International president, theCEO as well as of those of the different MC sub-committees.

2.

Objectives and division of labour

The primary objective of Retina International is to promote research thatwill lead to the treatment and cure of retinitis pigmentosa, Usher syndrome,
macular degeneration and allied retinal dystrophies. All retina International
activities should be viewed in the light of this objective.
Major areas of focus were defined as:- Support of activities that focus on finding treatments or a cure for retinal
dystrophies- Information dissemination- Membership development- The biennial international conference- Organisational efficiency- Marketing and communications- Establishment and sustainability of the Retina International office in
DublinThe aim of the sub-committees is to share responsibilities and workrequired by the organization. As much as possible, the sub-committees
followed the work plan accepted by the General Assembly 2016 in Taipei.

3.

Term of office report July 2016 - January 2018

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3.1

Introduction

At its first face-to-face meeting, held after to the GA in Taipei, the MCestablished an ambitious work plan that gave greater responsibility toindividual MC sub-committees. The chairs of the different sub-committees
were asked to include in their committees non-MC members in order toinclude more member organisations to participate in the development of
our organisation by utilising their considerable knowledge and experience.
Unfortunately, our call for volunteers was met with a minimal response,reflecting the fact that potential candidates are very involved in their homeorganisation and that local work takes precedence over RI obligations.
However, there was involvement by members in the development ofcapacity building projects with positive outcomes and we hope this can be
expanded upon in the period 2018-2020.
This report is structured along the work plan accepted by the GA 2016 in
Taipei.
The MC held a mid-term meeting in September 2017 in Barcelona inconnection with EU Retina, which is a major conference for medical andscientific experts as well as industry working in the retina space. While it isa European event EU Retina now attracts a global audience and was agood opportunity for the MC to meet with the industry representatives who
collaborate with and support Retina International but also the scientists andclinicians the organisation works with. The inaugural Retina International
Meeting of Partners (RINP) took place the day before the conference on
September 6th and allowed for participation in a symposium organised by
Retina International during EU Retina.
At the MC meeting the group reviewed the objectives of the organisation inparticular work plan and sustainability of the RI office, the on-going work of
the RI President's office and preparation for the RINP and the General
Assembly.
3.2

Membership, Governance and Constitution

3.2.1 General Information
Retina International maintains regular contact with its members through thesharing of research information and related topics. The members of theRetina International, GA 2018, Auckland (New Zealand)
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MC, the president and CEO take every opportunity to meet withrepresentatives of member organisations to mentor and to maintainpersonal contacts. Also, whenever possible, the president accepts theinvitation of member organisations to visit, coach the leaders of theorganization and to speak at their conferences and special events.
However, the primary contact with member organisations is conducted byemail.
Emphasis is given to nurture and build relationships with new anddeveloping members in order to provide them with the advice and support
needed to establish a strong organisation of patients with retinaldegenerative diseases. At the GA 2018, we will have the pleasure towelcome back at least two earlier organisations into the RI family.
However, with sadness we will also have to accept to downgrade some of
the member organisations to the Interested Group level, since they wereunable to fulfil their financial obligations.
The financial crisis has hit a number of them enormously.
Last time we reported that with sadness FFB Canada were leaving Retina
international. However, we are happy to report that FFB Canada will reapply to become a full member of the organisation in 2018.
3.2.2 Membership Sub-Committee report
Member: Claudette Medefindt
The MC evaluated the membership structure and decided that there was aneed to adapt it.
The membership sub-committee proposes that the constitution of Retina
International be amended to include an extra category of membership i.e. A
B C category membership.
Section 4.2 of the constitution shall be amended as below.
Membership
4.1.1

4.1.2

The membership of Retina International is open to societies ofpeople with a retinal dystrophy and organizations with a specificinterest in retinal dystrophies.
In the instance of more than one full member in a country, therespective boards of the individual organisations, and theirscientific and medical advisory boards (SMABs), are encouraged
to meet at least once a year to avoid duplication of effort.

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4.1.3

4.2

If such meetings take place, as described in 4.1.2, a report should
be sent to the Retina International president.
Membership Classification

Five (four) classes of Retina International membership exist:
4.2.1

4.2.1.1

4.2.1.2
4.2.1.3

4.2.1.4

4.2.1.5
4.2.1.6

FULL MEMBERSHIP
In order to be a full member of Retina International, a society mustshow that:
it is a charity duly registered as such under its national laws (seenote to 1. Definition), and has a constitution or is a sub-group of alarger organisation, such as a society for the blind, that has aconstitution
its purposes coincide with Retina International’s objectives,
it is a society for people with Retinal Dystrophies such as Retinitis
Pigmentosa (RP), Usher Syndrome, Macular Degeneration andother allied retinal dystrophies and their families and friends withsound scientific and medical support,
it may be a standalone organization or a sub-group of anorganization for the blind, but in the latter case must give proof of
independent activities and accept all people with retinaldegenerative diseases irrespective of their stage of visual
impairment. Membership should also be extended to parents ofminor children with retinal conditions
a medical and scientific advisory board or committee has been
constituted and approved by the Retina International SMAB,
up-to-date audited accounts have been provided to the RI
Management Committee.

4.3

CANDIDATE MEMBER
A candidate member is a society which has stated an intention to
apply for full membership in the future or which has alreadyapplied for full membership, but either:

4.3.1

In the opinion of the GA is not yet in a position to meet all thecriteria for full membership, or,Is a first-time applicant for Retina International membership whichapparently meets all the criteria for full membership, in which caseit must serve as a candidate member for two years prior toapplying for full membership.

4.3.2

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4.4

INTERESTED ORGANIZATIONInterested organizations include retinal dystrophy societies thatare in the early stages of becoming organised and establishedorganizations that would never apply for full membership in theirown right, for example, blindness organizations that do not haveseparate retinal dystrophy sub-groups.
To accomplish that people with a Retinal Dystrophy can findsolace, hope and a future it is necessary to broaden the influenceof Retina International. Only helping, advising and binding newgroups to Retina International can do this. Therefore, the first stepis interest.

Interested organizations are those:
4.4.1
which are not yet in a position to become a candidate member orwill never qualify to become a candidate member,
4.4.2
which need all the support to acquire enough strength or potential
to reach the next phase as candidate member,
4.4.3
which will be on the Retina International mailing list and will beassigned a member of the MC as primary contact.
4.5

ASSOCIATED ORGANIZATION
Associated organizations include companies, scientific institutes
and funding organizations that will never be in a position to fulfil
the requirements of the other membership categories of Retina
International. An associated organization promotes, funds or
actually conducts research into retinal dystrophies and is notenlisted to Retina International through other channels.

4.5.1

Associated organizations will not be present at the General
Assembly unless by special invitation of the MC,
Associated organizations will have no voting rights,
Associated organizations can have a seat in the SMAB where
they can help influence the course of research,
Applications to become associated organizations must be
approved or rejected at the next General Assembly,
Associated organizations will pay fees.

4.5.2
4.5.3
4.5.4
4.5.5
4.6

B Category membership may be extended to organisations andpatient groups who are not in a position to comply with all therequirements of full membership but wish to contribute to the workand objectives of Retina International. These organisations will be
invited as observers to the General Assembly but will not be

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entitled to vote. The membership fees of each organisation will be
determined by the finance sub- committee and will be directly
proportional to the rights that they are accorded.
Membership rights at present are:
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.

2 members may attend the GA
They have one vote at the GA
Propose a member/s for the MC
Make representations to the GA
Attend the CE program
Apply to present at the CE
Have 2 delegates on the SMAB international
Invite delegates to attend the SMAB meeting
Use of RI logo
Details on website
Access to Scientific information
Attend the RI conference
Membership cat

RightsPayment

Full

Full

As present

CandidateObservers at GA andCE then 4,5,10,11,12
To be determined by
Membershipcommittee in
conjunction withfinance subcommittee
Attend CE as
observers then 9 to
12

As present

Cat: B (Does notcomply with all
membership
requirements)

Cat: Associate
member

Cat: Interested group As above

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To be determined by
Finance committee

To be determined by
Finance committee(at present E 500)
Finance committee

pg. 8

3.2.3 Governance report
The main issue in Governance was the different membership categories,that do not allow for organisations that do not accept parents as membersin their full right. The GA 2018 will be presented with a respective proposal.
Furthermore, we need to deal with the fact how to handle organisations
that were full members and return after having left. A respective proposal issubmitted to the GA 2018 (see also membership report). (Note from
3.3

Research

3.3.1 General activities
The main task of the research committee is to work in close cooperation
with Professors Gerald G. Chader, Joe Hollyfield and Eberhard Zrenner toorganise the RI SMAB meetings at the ARVO meetings in Seattle in 2016
and Baltimore in 2017. The agenda has to be developed, the speakers
invited and the meeting location and logistics organised. We are proud toreport that this meeting has developed such a high reputation that
invitations are highly sought and attendance is limited.
The minutes of the SMAB provide the RI membership with a valuable
insight into ongoing research and treatment trials that would not be
available elsewhere.
Whenever possible, the CEO and the president represent and advocate forthe needs of patients with retinal degenerative diseases. A comprehensive
list of the speaker's engagement on behalf Retina International is added tothis report.
As mentioned previously in September 2016 and September 2017 Retina
International organised a symposium within the EU Retina Conference. thismarks the continuation of a series of symposia dedicated to support ofresearch, drug development, patient reported outcome measures and reimbursement.
Retina International was asked to be part of the scientific board of several
EU funded projects: Treatamd ocuTher, nanomed, AMD Risk, medtech
etc... The projects aim to bring basic research to the bed-side, and to bringdrug development to clinical trial stage, respectively. Emphasis is also
given to the need to develop criteria for early detection and to improveaccess to genotyping.

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Retina international was also involved in a major EU application aiming to
improve diagnosis and genotyping of rare inherited retinal degenerations. If
this application would have been successful, RI could employ a
communications professional for this project. Despite two trials and a highranking of the project it was denied funding. However, we are pleased toreport that we have acquired funding elsewhere to finance a Science andCommunications Officer to work on areas such as this starting early 2018.
The annex on travel activities gives a detailed overview of the different
activities.
3.3.2 Patient reported outcome measures
Patient reported outcome measures are becoming more important andneed to be evaluated according to the stringent criteria of research. In 2015
RI started to bring the topic on the agenda of researchers and policy
makers in organising a first meeting in Dublin. In 2017 in Washington in cooperation with FFB-USA we organised a meeting which was attended bymore than 80 persons from academia and industry as well as byrepresentatives of the regulatory bodies FDA and EMA. it was decided
there to publish the outcome of the meeting in a paper and a first editorial
meeting was organised by RI in Baltimore during ARVO 2017. The processof writing up the document is in progress; further discussions will take placein 2018 with publication planned for later that year.
3.3.3 ERN European Reference Network for Rare Eye Diseases
Retina international was strongly involved in the preparation of theapplication of the ErN Eye through its president and CEO. The application
was successful and in March 2017 the ERN Eye was granted the status by
the European Commission. The network comprises 29 Health Care
Providers (HCP) in 13 countries. In early December 2017 a call will
published to accept new members from countries where no HPC is alreadypart of the network. This concerns mainly Ireland, Spain, Sweden and
Norway. This network will improve patient care and health innovation
throughout Europe, should enable access to the best quality of treatment
and support and stimulate new research. The ERN process will network
globally which is critical for our organisation.

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pg. 103.4 Communication and Marketing
Member: Fraser Alexander
In accordance with the GA 2016 directives, in early 2017 Fraser Alexander
commenced work with the CEO on a "Communication and Marketing
Strategy Overview and proposed an actions document". The
Communications and Marketing Objectives of Retina International are toestablish it as the leading organisation for supporting research in retinaldegenerative diseases, advocating for access to care and treatment and inproviding relevant up to date patient information. In the belief that a more
professional approach requires better investment in communications
platforms and a coordinated strategy for the dissemination of information,
we proposed a list of 10 actions.
The Dublin office has made significant progress in a number of areas,
many of which are currently being simultaneously incorporated into thecommunications and marketing plan for the 2018 RI World congress in
Auckland. especially so in areas such as assembling a cohort of key
opinion leaders, developing position statements on topics of particularinterest and networks of site contributors. I plan to focus on individual
actions that contribute to many of the 10, if elected, in the 2018-2020 MC
term.
1. Develop and implement a process for the dissemination of the most up
to date news, views and information through IT platforms, newslettersand mail outs.
2. Develop a process to regularly update the RI website for maximum
impact and to attract regular visitors.
3. Develop a Social Media policy,
4. Through membership develop a cohort of contributors to provide
information to the site including Wikis and Blogs.
5. Implement a simple process to respond in a timely fashion to personalenquiries.
6. Publish Retina International statements and press releases for use bymember countries.
7. Develop a cohort of key opinion leaders drawn from the membership,
SMAB and learned societies to comment on developments within the
research and development space.
8. Design printed materials that highlight the work of RI and why it is ofvalue to join as a member or to support us as a corporation or afoundation.

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9. Develop and implement a house style to be used in all communications
materials to ensure accessibility and brand identification
10. Develop position statements on topics of particular interest.
3.4.1 World Retina Day 2016 and 2017
On World Retina Day 2016 the new Retina International Website waslaunched. On World Retina Day 2017 a toolkit on Genetic Testing waslaunched. The theme for 2017 was the importance of equitable access toand reimbursement of genetic testing services. Two press releases were
issued and distributed among our membership. Consideration needs to begiven to the fact that World Retina Day does not take place on the same
day for all groups and so therefore cannot be called a ‘World’ day officially.
RI will survey its members to gain its perspective on an approach to the
WHO to designate and agreed date that is aligned to other stakeholder
groups such as learned societies in the retina space.
3.4.2 Retina International Website
The website of Retina International was relaunched on World Retina Day
September 24th 2016; member data is updated as and when it is supplied
and the news and events pages are kept up to date with developments inresearch and policy. A Retina International YouTube channel has been set
up along with a Facebook and twitter account. Traffic has increased inparticular to the disease specific pages. Dara Creative are supplying a fullreport.
3.4.3 Genetic tool kit
SPARK Therapeutics funded with an unrestricted educational grant thedevelopment of an online toolkit on genetic testing for Inherited Retinal
Diseases that was launched on World Retina Day, September 30th 2017.
The toolkit is entitled RED Alert playing on the term Rare Eye Disease andtaking ownership of this term for RI. The Toolkit consists of text describing
the fundamentals of genetics, the evolution of testing services, the types oftests available and where they can be accessed. There is also a section on
the risk and the benefit the important issues to be considered and theimportance of genetic counselling services. The final section details theway in which we can work together to advocate for better access to testingand services. The toolkit has followed best practice and each text section is
kept short and digestible and each section contains an explanatoryaccompanying video clip in the hope that these will be of benefit to thoseRetina International, GA 2018, Auckland (New Zealand)
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who are vision impaired. A survey of patients and member organisation has
allowed us to understand the need of our community and tailor the toolkit toaddress their requirements.
3.4.4 AMD tool kit
Hoffman LA Roche provided an unrestricted education grant to fund thedevelopment of an accessible, state of the art toolkit on AMD which waslaunched on November 27th 2017. The toolkit addresses the importance ofimproving screening processes globally to enable early diagnosis of AMD
leading to prompt access to appropriate treatment. The toolkit clearly
defines the early, intermediary and late stages of AMD and includes
specific information on Geographic Atrophy (GA) and neovascular AMD.
The toolkit includes detailed information on the reality of living with theselife changing conditions and highlights the urgent need for greater
understanding and support. It is designed for a wide and varied audience of
stakeholders including the general public, at risk groups, patients and those
who care for them, medical professionals and policy makers. Vicky
McGrath was hired to facilitated to project with the RI Team and a coalitionof global patient groups, scientific writers and a dedicated SMAB. The next
step is to translate elements of the toolkit into six languages.
3.5 Retina International Conferences
3.5.1 Taipei (Taiwan) 2016
The Retina International Conference was held successfully in July 2016 in
Taipei (Taiwan). The conference was excellently organised and a great
success with 1000 participants from more than 50 countries. The format of
the conference was unique for Taiwan and the contact between patientsand scientists was extremely appreciated.
The organisers are to be complemented on their excellent organisational
skills in adapting the conference schedule to the typhoon-imposed lastminutes changes and re-scheduling.
3.5.2 Auckland (New Zealand) 2018
The GA 2014 granted the hosting of the conference in 2018 to Retina New
Zealand and the conference will be held in Auckland.

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The program is formulated with diverse topics which are of interest to
patients and experts in retinal degenerations alike. Updates on emerging
therapies and clinical trials will be shared with participants at theConference. Financial support is provided through a number of industry
partners and local government departments. So far, we have a significant
registration of attendees and we are confident of an excellent turnout in
Auckland this coming February 2018.
3.5.3 Reykjavík (Iceland) 2020
Report from Kristin Halldor Einarsson:-

Agreement is in place with the Icelandic Ophthalmology Associationon common dates and venue for the Nordic Ophthalmology Congressin 2020 (NOK 2020) and Retina International World Congress in 2020
(RIWC 2020)
Dates: 03.06 – 07.06.2020.
Venue: Harpa – Concert and Conference hall. Reykjavík-

Agreement is in place with professional congress and event planner:
CP Reykjavík – Conference Event Incentive.
CP Reykjavík will be servicing both NOK 2020 and RIWC 2020.

-

Local organizing committee has been appointed and has started to
work.

-

The Scientific committee has been appointed, members are:
Chair: Prof. Ragnheiður Bragadóttir University of Oslo
Department of Ophthalmology.
Prof. Einar Stefánsson MD, PHD Department of Ophthalmology
National Hospital Reykjavik, University of Iceland
Prof. Jón Jóhannes Jónsson Chair of Department of Genetics
and Molecular Medicine at Landspitali University Hospital
Ms. Sigrídur Masdottir, head ophthalmologist at the Institution forthe blind in Iceland.
Mr. Sveinn Hákon Harðarson Assistance professor in
ophthalmology at the University of Iceland.
Prof. Thor Eysteinsson Professor of neurophysiology at the
University of Iceland.

Retina International, GA 2018, Auckland (New Zealand)
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pg. 14-Promotional material for RIWC 2020 to distribute on RIWC 2018 isready.

-RIWC 2020 website will be launched at RIWC 2018

3.5.4 Future conferences
A major task of the President is to be on the constant lookout for member
organizations to host the biennial RI conference. We are happy toannounce that Fighting Blindness Ireland was not discouraged and will bebidding for the conference 2022.
3.6 Youth
Member: Caisa Ramshage
From the Management Committee we would like to stress the importanceof engaging the youths of our member organisations. Even if we all would
like to eradicate all retinal diseases it will take time and we need to find theright persons to take over the assignments in our organisations.
In Taiwan during the Retina International conference there was a parallel
youth program which included both social parts such as National Palace
Museum and Taipei zoo, but also a scientific programme by professor EliseHeon from Canada. The youths enjoyed Elise Heon’s lecture, since it was
not only a lecture but they also had a discussion part where the youths
were able to ask questions. The participants in Taiwan came from New
Zealand, Switzerland, Norway and Sweden, they were guided by youths
from Taiwan and learned a lot about daily life in Taiwan.
The programme was arranged by Zane Bartlett from New Zealand withassistance from Caisa Ramshage. Despite none of the organisers being in
Taipei during the planning or before, it worked fairly well due to good
assistance from Retina Hong Kong and Retina Taiwan who organised themain conference.
There will also be a youth programme at the Retina International
conference in Auckland, New Zealand.

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3.7

Retina International Operations

3.7.1 Funding and accounts
The budget of Retina International includes four major items:- Basic running costs (phone, mailing, stationery, travel costs)- Costs of assistants- The Retina International website- The Retina International Office in Dublin
The MC and the president endeavoured to be cautious in its spending andstayed within the budget, allowing for an increase in the capital, despite thefact that we are still faced with down-payment plans and non-payment offees. The president is concerned that new members are not joining due toinability to pay fees, or that after a short period of membership;organisations stop paying and have their membership downgraded. It
seems that financial considerations are hindering Retina International frommoving forward.
However, we are happy to report that fundraising efforts have beensuccessful; additional funds through personal donations and throughparticipation in European projects were made available to Retina
International especially in the form of travel grants in order to increase ourvisibility. Furthermore, thanks to two major grants from Novartis the website
can be improved and a workshop and White Paper on patient reported
outcomes in clinical trials can be carried out in 2016 - 2018.
In order to finance the Dublin office major fund-raising efforts have to beundertaken. Thanks to unrestricted educational grants from F. Hoffmann-La
Roche, Novartis and Spark Therapeutics major projects could been
executed and thus assist to finance the office in Dublin. With the creation of
the Retina International Network Partners (RINP) we do hope to raise
additional funding that also can be used as core-funding.
The net capital of RI is healthy at present. However, we are heavily
engaged in the RI office and trying to cut costs and make savings wherever
possible. In order not to increase the membership fee, we did not continue
the scientific newsletter. This part of the website will be re-designed should
there be additional funds available.
As the conference 2018 is held early in February 2018 it is not possible toorganise the auditing of the accounts before leaving for New Zealand.
Therefore, the GA will be presented with the accounts such as they will be
submitted to the auditors end of February 2018.

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3.7.2 Assistant
The main tasks of the assistants (Rita Filippini and Daniela Capelli) were:- Bookkeeping- Financial administration- Correspondence- Dissemination of information- Retina International archives- Retina International database- Retina International website changes (addresses)
Please note that an increasing number of members also means anincreasing number of administrative tasks and correspondence. The time
allocated to staff is the absolute minimum and the president is still required
to do a lot of the secretarial work herself. In order to cover actual needs,
50% support would be necessary instead of 30%. The installation of the RI
office also increases temporarily the time the president has to dedicate to
RI affairs.
Members could easily help to save assistant’s time and funds by paying
fees in time and by sending their documentation and address changes
without prior reminder.
3.7.3 Retina International Office, Dublin
The CEO has continued to work primarily on sustaining the RI Dublin officethrough securing unrestricted educational grants for specific projects. Someof these projects have allowed us to hire a part time project manager on apart time contract in 2017 and we are currently recruiting a Science
Communications officer on a part time contract from January 2018. The
CEO hired a part time intern in late 2017 to carry out basic tasks. As the
CEO does not have an assistant to date we looked to secure this function
through an intern position. We are happy to report that a business graduate
from the United States will work with the Dublin team from January to
March 2018 as part of a work placement programme. The intern will focus
on administrative tasks and it is hoped that this can be a rolling position
that will free up time for the president and the CEO to concentrate on thestrategic development of the organisation. In order facilitate theappointment of new staff at the Dublin office a new space was rented from
June 2017 this is an additional but necessary cost to be covered by fundraising. The Dublin office also facilitates the implementation of theRetina International, GA 2018, Auckland (New Zealand)
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pg. 17

Marketing and Communications strategy, established new social media
platforms and hopes that 2018 will allow for significant work on theseareas. It is important that members continue to share their news andinformation with the RI team to ensure maximum publicity for the Retina
Community at large. The Dublin office in collaboration with the Zurich officealso works on policy development and is concentrating on issues ofdiagnosis, access to medicines and the health technology assessment
process.
3.7.4 Travel activities of the president and CEO
Participation in meetings and conferences increases the visibility of Retina
International. During the term of office, the president and CEO committed
to the following travel activities:
president Travels abroad of 105.5 days
CEO Travels abroad of 55 days
The most important travel commitments were:- ARVO 2017
- Participation in the EURORDIS Round Table of Companies Conference
as a guest speaker. The purpose being the development of a paper on
Access to Orphan Drugs- Meetings for the ERN including the launch in Vilnius and the opportunity
to present to the 1000 strong audience on the ERN-EYE- The Kick off meeting of the ERN-EYE in Tubingen- Participation in the ERN-EYE Ontology Meeting- Various Rare Disease Meetings in Europe- Presentations at the RETINA Dublin Meeting- Presentations at the Macula Retina European Congress – Seville Spain- Presentation at the Global BioCapital Meeting of Venture Capitalists inlife science as invited speaker – Amsterdam- Presentations to International Society of Genetic Eye Disease andRetinoblastoma- Presentation on access to orphan therapies at the meeting of healthministers at the EU Summit in Malta- Presentation to the Committee of Orphan Medicinal Products as part ofan event for the European Presidency- Presenter Genomics and General Data Protection Regulation (GDPR)
Enterprise Ireland Dublin- Visit to FUNDALURP Chile- EU Retina 2016 and EU Retina 2017

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pg. 18

A list is added to this report. Both, the president and the CEO, are making
sure that as much as possible of the travel costs are funded externally. It is
expected that RI is present at high level meetings of stakeholders to ensure
the views and concerns of the community we represent are noted and mostimportantly acted upon.
3.8

Support of research applications

MC members were actively involved in preparing several applications forresearch support by the European Commission. This was a difficult process
and required a lot of effort by researchers and other persons involved.
Even if these projects are only partly successful, they will have had theadvantage of bringing researchers together to discuss common research
projects. This process was very fruitful and continued on other levels. In allthese efforts, the Retina International SMAB played a major role. In
Europe, the chair of the SMAB, Prof. E. Zrenner, and Prof. José Sahel aswell as Prof. A. Moore are playing a major role in bringing researchers
together and moving things forward.
The respect that is paid to Retina International by funding agencies isreflected in the fact that RI is asked to support grant applications and we
can see that applications supported by Retina International are successful.
A major effort was made by the SMAB and the RI presidency and its CEO
to bring clinicians together to apply for the European Reference Centre
network initiative (ERN). Deadline for the grant application was 21st ofJune and in December 2016 we received the news that the application was
successful and the ERN Eye would be effective by March 2017. The ERN
Rare Eye Disease will improve the care of all patients with rare eyediseases and facilitate the participation in clinical trials.
Patient representatives play a major role in leading and supporting thiseffort. The CEO and the president attended the first meeting in Tubingen
and the president attended the first meeting on Ontology in Mon SaintOdile in 2017 as well as meeting to develop guidelines in Rome on
December 6th and 7th. The CEO in her capacity as Vice-President ofEurordis attended a number of high level meetings organised by theEuropean Commission and Eurordis.

Retina International, GA 2018, Auckland (New Zealand)
Appendix 03-1 President’s, MC and CEO reports 2016-2017 – 18-02-08

pg. 193.9Retina Europe

In September 2017 the macular organisation Spain together with Retina
France organised a meeting in Seville (Spain) with a European reach out.
During this meeting they discussed a number of follow-up actions to revitalise Retina Europe.
3.10 Ibero-Latinoamericano Retina
During the FUNDALURP conference in October 2017 the member
organisations of Latin America met and decided to strengthen the regional
co-operation including all Spanish- and Portuguese speaking countries. A
workplan was established and time lines are set.
3.11 AMD Alliance
In July 1999, Retina International became aware of the creation of AMD
Alliance International. One of the founding members of this organisation is
the Foundation Fighting Blindness. As the leading umbrella organisation
promoting research into retinal degenerative diseases, it seemed importantthat Retina International should be part of this new organisation and try to
influence it not only to promote awareness of AMD itself but also of the factthat AMD requires increased research funding in order to find a cure for thisdisease.
The mission of AMD Alliance International is:- To generate awareness and understanding of age-related maculardegeneration, to promote the importance of education, early detection,knowledge of treatment and rehabilitation options- To preserve vision and improve the quality of life of individuals affectedby Age-related Macular Degeneration
Initial target audiences and focus areas are:
- General Public/Senior Community/Caregivers and Support
Groups/Media- Medical Community/Insurance Payers/Government Decision
Makers/Media;- Current/Future AMD Alliance Members (Seniors & Vision Organisations)

Retina International, GA 2018, Auckland (New Zealand)
Appendix 03-1 President’s, MC and CEO reports 2016-2017 – 18-02-08

pg. 20Retina International became an AMD Alliance board member and actively
influenced the Retina Week policy by encouraging its member
organisations to cooperate with local events.
AMD Alliance undertook a review in order to streamline decision making
and thus enable the organisation to react quickly to new developments. As
a consequence, AMD Alliance underwent a re-organisation and is about toreform its structure and objectives. Retina International will monitor thedevelopment of this organisation very carefully and encourage members totake part, thereby actively guiding the focus of this organisation into ourown areas of interest, i.e. to support research in order to find a cure for
AMD as well as to ascertain access to treatment for patients with AMD.
However, in 2015 AMD Alliance was facing financial difficulty in its activities
and in early 2016 the present chair, Mark Ackermann, had to call a halt ofactivities. It was assured that there are no financial debts. In 2017 AMD
Alliance ceased operations.
3.12

Retina International Scientific and Medical Advisory Board(SMAB)The Retina International SMAB consists of two representatives of thenational medical and scientific advisory boards of full members. The SMAB
meets annually during the ARVO meeting. This took place in Baltimore
2017. Under the leadership of Prof. J. Hollyfield and Prof. E. Zrenner, it has
become a real place of exchange and plays an important role in updating
Retina International members on the development of research in the fieldof retinal degenerative diseases. Furthermore, the Retina International
SMAB plays an important role as advisor to the organisers of the Retina
International Conference.

4. Reflections for the future
Retina International is a growing organisation which is successfully
developing from being an informal organisation to becoming morestructured with rules and regulations. This transition is difficult and needs
careful attention. Broadening the scope of Retina International also means
bringing in new organisations with different cultures and working rules.
However, in my opinion too much time is spent on budgets and rules.
Although these provide the basis for good governance, they should not
become the focus point of action. The General Assembly 2012 opened theway for a professional office and CEO for Retina International thus having

Retina International, GA 2018, Auckland (New Zealand)
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pg. 21

a person available full time to attend to all the daily challenges. The GA
2014 allocated funds for six months running costs. In January 2016 the
new CEO, Avril Daly, has started her job and is seeking successfully thefunds to assure sustainability of the project. However, I wish not to hide,
this is an enormous task and I wish to congratulate Avril Daly for her
successful work so far. We are pleased to announce that we are confident
that we have with the new instrument of the Retina International Network
Partners a system to secure the basis costs for the office in Dublin in thelong term.
Retina International is in a very important phase of its existence: A numberof clinical trials in humans have already begun and soon a number of new
trials will follow. Treatments are not there yet, but they are clearly on thehorizon. When writing this report, we expect (or hope for) a positive
decision by FDA to register the first gene therapy for RPE65. This means
we need to prepare ourselves very carefully by:- Influencing treatment trials in a way that they will have meaningful results- making sure that the right patients for the right trials are found- knowing the regulatory framework for introduction of new treatments- lobbying health authorities that all patients with a retinal degeneration
have the right to an early and precise diagnosis including genetic
diagnosis if they wish
Retina International has a clear-cut mission statement and has to live up to
its expectations.
The time is excellent, but we cannot sit back! We will have to foster all ourefforts to face the following challenges:- Find the missing genes: The technology and strategies to find new genes
have increased enormously. Today more than 225 genes are identified
that cause inherited retinal degenerative diseases covering probably
slightly more than 70 % of all cases. The technology exists that themissing genes might be found within the next 5 years. However, funding
agencies do not believe finding new genes to be an innovative research
approach and therefore financial support is difficult to find. The firstmodulating genes are found and show how important they are inpredicting the cause of the disease.
- Support natural history studies: in order to be able to evaluate theadditional value of a possible treatment on the progression of thedisease, natural history studies are needed for both disease groups:
AMD and inherited retinal degenerative diseases.
Retina International, GA 2018, Auckland (New Zealand)
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pg. 22

- Bring research from the university laboratory into the laboratories of thepharmaceutical industry: Clinical trials are very expensive. Therefore, it isimportant that we face the future and develop strategies to do lobbying
among health governments. One of the challenges will be to work forboth AMD and RP. Special attention will have to be paid to avoid thepossibility of potential RP treatments turned into AMD treatments alone
because that disease promises more profit to the companies andshareholders.
- Avoid segmentation among patient organisations: A number of clinical
trials are starting up for specific forms of retinal degenerative diseases. It
is understandable that patient groups tend to split off in the hope ofaccelerating the development for their own disease.
- Prepare the patients: The first clinical trials and treatments focus on
patients with inherited retinal diseases. In order to have the best possible
access to treatments for inherited forms of retinal degenerations, patients
have to be identified and informed and co-operation with organisations of
rare-diseases improved. A number of countries have installed a plan topromote rare diseases and it is important that inherited retinal diseases
are included.
- Learn how market access of drugs is working: In order to be able to
make sure that future treatments are available to the potential patients intime, we have to gather the expertise on how drugs access the market,
how the health market is regulated and how the health insurers cover thecosts involved.
- Member organisations should actively promote reliable and updated
patient registries where they not exist- Member organisations should call on their departments of health inGovernment to pay for the genotyping and phenotype and for theregistries being the base for access to future treatments- Improve cooperation among members - in order to face the challenges,
co-operation among the different members must be improved. Science is
not restricted to national borders or continents.
- Improve co-operation with the organisations of rare diseases and takeadvantage of their new platforms such as Rare Connect.

Retina International, GA 2018, Auckland (New Zealand)
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pg. 23

- Furthermore, we as an organisation have to make sure that our future isbright: Some of the leading people are turning into a certain age group.
In long term we have to prepare of change of leadership and generation.
Doing this we have to be careful to acknowledge the economic situationthat has changed. it is not any more possible for young people todedicate many days to charitable work. Also, Retina International will
have to face the future and to consider if young people that do a lot ofcharitable work as a volunteer could be remunerated for their loss of gain
and secured with the usual insurances.

5. Acknowledgements
I would like to express my sincere thanks to the members of theManagement Committee and our CEO Avril Daly without whose assistanceand encouragement the running of Retina International would be
impossible. I would also like to express my special thanks to Dr. G. Chader
who was instrumental in organising the Retina International SMAB
meetings as well as in the dissemination of scientific information.
Furthermore, the Foundation Fighting Blindness contributes generously topromote research in organising meetings and opening its doors toresearchers from other Retina International member organisations. I also
would like to express our sincere gratitude to Fighting Blindness, Irelandand especially to its CEO Kevin Whelan who hosted our CEO within
Fighting Blindness Ireland for 18 months.
Our sincere thanks go also to the Scientific and Medical Advisory Boardand its two chairmen, Prof. E. Zrenner and Prof. Joe Hollyfield, for their
help and willingness to assist and support our endeavours. We wish toacknowledge the efforts made by all researchers involved in the
preparation of proposals to the European Union and other funding
agencies and congratulate them on their success.
I would also like to acknowledge the generous financial support withunrestricted educational grants by Novartis, F. Hoffman-la Roche, Retina
Implant AG, Okuvision GmbH and Spartx.
I wish to acknowledge the Swiss Federation of the Blind and Visually
Impaired, who provide us with our facilities at no cost and allow us to utilize
their infrastructure.
Last, but not least, I would like to thank all Retina International members fortheir efforts over the last two years. It is an exciting time to work for ourcause and I am convinced that one day we will achieve our common goal
to find a cure for RP and other retinal degenerative dystrophies!
Retina International, GA 2018, Auckland (New Zealand)
Appendix 03-1 President’s, MC and CEO reports 2016-2017 – 18-02-08

pg. 24Christina Fasser
President, Retina International
Zurich, November 25th, 2017

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pg. 25

Appendix 1 to president's report 2016-2017
Member Organisations
Country

Status name of organisation

Australia

FM

Retina Australia

BrazilFM

Retina Brazil

FinlandFM

Retina ry / Retina Finland

FranceFM

Retina France

GermanyFM

Pro Retina Deutschland e.V.

GreeceFM

Hellenic Retina Society (H.R.S.)

Hong Kong FM

Retina Hong Kong

IcelandFM

Retina Iceland

Ireland

FMFighting Blindness

Italy

FM

Retina Italia (Onlus)

Japan

FM

JRPS

Netherlands FM

Oogvereniging Nederland

New
Zealand
NorwayFM

Retina New Zealand Inc.

FM

Retinitis Pigmentosa Foreningen i Norge

PakistanFM

Pakistan Foundation Fighting Blindness

South
AfricaSpain

FMRetina South Africa

FM

FARPE

SwedenFM

Svenska RP-Föreningen

Switzerland FM

Retina Suisse

TaiwanFM

Retinitis Pigmentosa Taipei

UK

FM

RP Fighting Blindness

USA

FM

Foundation Fighting Blindness

IsraelAM

Lirot Association

Argentina

CM

Stargardt APNES

Chile

CM

FUNDALURP

Maroc

CM

Association Retina Maroc

Spain

CM

Asociación Macula-Retina

Retina International, GA 2018, Auckland (New Zealand)
Appendix 03-1 President’s, MC and CEO reports 2016-2017 – 18-02-08

pg. 26

BelgiumIG

Retina Pigmentosa ASBL

CyprusIG

R.P. Society Cyprus

CyprusIG

Pancyprian Organization of the Blind

Portugal

IG

Fundación Retinitis Pigmentosa de P.R.

Argentina

IG

Fundación Argentina de Retinosis Pigmentaria

CanadaIG

The Foundation Fighting Blindness - Canada

China

IG

RP Committee - China Association of the Blind

India

IG

Retina India

Iran

IG

Iran RP Center

IsraelIG

NAMAG - Association of AMD patients in Israel

Malaysia

IG

Teoh Beng Hian

MexicoIG

Patricia Eugenia Zubirán de Aguilera

Philippines

IG

Prof. Froilan P. Inocencio M.D.

PolandIG

Retina AMD Polska

Portugal

IG

Associaçao de Retinopatia de Portugal (ARP)

PuertoricoIG

FUNDACION RETINITIS PIGMENTOSA DE P.R

Saudi
ArabiaSingaporeIG

Hatim Abuzinadah

IG

Eye & Retina SurgeonsSingapore

IG

Retinitis Pigmentosa Society (Singapore) / RPSS

UgandaIG

Retina Uganda

Retina International, GA 2018, Auckland (New Zealand)
Appendix 03-1 President’s, MC and CEO reports 2016-2017 – 18-02-08

pg. 27

Appendix 2 to president' s report 2014-2016
Travel activities of RI president during the term of reporting
Location

Task
Novartis Meeting review ofZürichprojects
Eu Retina Symposium and
Copenhagen Meetings
LeidenMeeting at Proqr
European Patient Information
MilanoSummitFlorence
Meeting of Treatamd
Barcelona
AMD Risk Meeting
Washington PROM Meeting
DublinRetina Meeting
Amsterdam Kick-off Meeting OcuTher
ZürichNovartis Payers Meeting
DublinCEO meeting
Talk to international leaders of
Weggis LU Hoffmann-La Roche
LondonNanomed Meeting
GenevaRDI Meeting
Brussels
Eurordis Stakeholder Meeting
Vilnius
Launch ErN
Madrid
IAP and GA coalition Roche
inauguration Meeting
TubingenTubingenTubingen
ERN Board Meeting
Brussels
EPF Leadership meeting
Baltimore
ARVO
Kobio
Finland
OcuTher Meeting
Roche Advise on clinical trial
Baselpatient perspective
EU Retina Symposium andBarcelona
MC midterm Meetings
Leeds
ISGN Talk
Mont StOdile
ERN Ontology Meeting
DublinRetina Meeting
DublinEPIS Meeting
Italian Society of ophthalmic
Naplesgenetics talk

From

To

Days

08.08.2016

08.08.2016

0.5

07.09.2016
26.09.2016

09.09.2016
27.09.2016

32

04.10.2016
19.10.2016
24.10.2016
07.11.2016
10.11.2016
12.12.2016
16.12.2016
05.01.201705.10.2016
20.10.2016
27.10.2016
10.11.2016
13.11.2016
12.12.2016
16.12.2016
06.01.2017

2
2
4
3.5
3.5
1
1
2

18.01.201705.02.201709.02.2017
21.02.201708.03.2017
14.03.2017

18.01.201707.05.2017
10.02.2017
23.02.2017
10.03.2017
17.03.2017

1
3
2
3
3
3.5

24.03.2017
03.04.2017
09.04.201705.05.2017

25.03.201705.04.2017
11.04.2017
13.05.2017

2
2.5
3
9

06.06.201708.06.2017

3

04.07.2017

04.07.2017

105.09.2017
15.09.2017

10.09.2017
17.09.201753

09.10.2017
12.10.2017
15.10.2017

11.10.2017
14.10.2017
17.10.20173
3
3

20.10.2017

22.10.2017

3

Retina International, GA 2018, Auckland (New Zealand)
Appendix 03-1 President’s, MC and CEO reports 2016-2017 – 18-02-08

pg. 28

Santiago di
Chile
TubingenRom
Eindhoven
DublinAucklandMeeting FUNDALURP
Kick off meeting medtech
ERN Meeting on Guidelines
Nanomed Mid-term meeting
CEO meeting
RI meeting

26.10.201704.12.201706.12.2017
18.12.201705.01.2018
03.02.2018

31.10.201705.12.201707.12.2017
19.12.2017
07.01.2018
13.02.2017

total

Retina International, GA 2018, Auckland (New Zealand)
Appendix 03-1 President’s, MC and CEO reports 2016-2017 – 18-02-08

6
2
2
2
3
10
105.5

pg. 29

Travel activities of RI CEO during the term of reporting
Location

Task
Eu Retina Symposium
Copenhagen and Meetings
LeidenMeeting at Proqr
Barcelona
AMD Risk Meeting
Washington PROM Meeting
UN Rare Disease
New York
MeetngDublinRetina Meeting
Eurordis Stakeholder
Brussels
MeetingVilnius
Launch ErN
Council of Health
Malto
Ministers
Brus EU
Inauguration Meeting
Parliament Tübingen
Brussels
EURORDIS BOARD
Tuebingen ERN Board Meeting
Baltimore
ARVO
Budapest
EURORDIS AGM
Barcelona
MC&EURetina
Leeds
ISGN Talk
DublinRetina Meeting
Brussels
EU Parliament
SavilleMacula Retina
Paris
EURORDIS BOARD
LondonRPFBUK
AucklandRI meeting

From

To

Days

07.09.2016
26.09.2016
24.10.2016
07.11.2016

09.09.2016
27.09.2016
27.10.2016
10.11.2016

3
2
4
3.5

11.11.2016
10.11.2016

11.11.2016
13.11.2016

1
1

21.02.201708.03.2017

23.02.2017
11.03.2017

3
3

19.03.2017

21.03.2017

3

22.03.2017
23.03.2017
03.04.201705.05.2017
18.05.2017
05.09.2017
14/09/207
12.10.2017
17.10.2017
18.10.2017
30.11.2017
09.01.2018
03.02.2018

22.03.2017
25.03.201705.04.2017
13.05.2017
21.05.2017
07.09.2017
17.09.2017
14.10.2017
17.10.2017
21.10.201702.12.2017
09.01.2018
13.02.2017

1
3
2.5
9
4
3
3
3
1
4
3
1
10

total

Retina International, GA 2018, Auckland (New Zealand)
Appendix 03-1 President’s, MC and CEO reports 2016-2017 – 18-02-08

71

pg. 30