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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 06-1

6.1

Retina International Secretariat: Report of the CEO

Motion: the MC moves to accept the CEO Report.

CEO Report:
The Retina International secretariat implements an agreed work plandeveloped in collaboration with the management committee (MC),president and the CEO. The following is a brief report on work to date.
Ongoing Projects Financed by Grants:
In the stated period there are three ongoing projects financed by grants
these are as follows:
PROM - Patient Reported Outcome Measures
Patient Reported Outcome Measures are critical in measuring the impact oftreatments on patients as accurately as possible. In November 2015 RI
received funding from Novartis to run a preliminary multi-stakeholder
workshop in Dublin, Ireland. The meeting recommended a 'White Paper'
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access to and reimbursement of potential therapies for Retinal
Degenerative Diseases. Novartis have funded further work on the projectand so RI organised an open workshop entitled -Functional Vision versus
Visual Function - Working Towards Integrating the Patient
Perspective- in Washington DC on Nov 10, 2016. The meeting hadparticipation from the FDA, EMA and NEI, Retinal specialists and Principle
Investigators working in this field as well as patient organisations andindustry representatives. A further meeting with representatives from thisgroup was held on May 9th 2017 at the ARVO conference in Baltimore MD.
The organising committee made up of Prof. Eberhart Zrenner, Prof EliseHeon, Prof Jerry Chader, Ms. Christina Fasser and Ms. Avril Daly are now
working with the representative group on development of the white paperand on securing a suitable publication for the project. Further meetings willtake place in 2018 with a publication later in the year.
Genetic Testing On-line Toolkit
SPARK Therapeutics funded the development of an online toolkit on
genetic testing for IRDs. The toolkit is entitled RED Alert playing on theterm Rare Eye Disease and taking ownership of this term for RI.
The Toolkit consists of text describing the fundamentals of genetics, theevolution of testing services, the types of tests available and where they
can be accessed. There is also a section on the risk and the benefit theimportant issues to be considered and the importance of genetic
counselling services. The toolkit has followed best practice and each text
section is kept short and digestible but we have included in each an
explanatory accompanying video clip in the hope that these will be of
benefit to those who are vision impaired.
A survey of patients and member organisation has allowed us tounderstand the areas where there was a clear lack of information and tailor
the toolkit to meet that particular need.
The text has been reviewed by three scientists and one clinician. A group ofindividuals with various IRDs and a group of young mothers with noknowledge of IRDs. This is to ensure that the information is useful to those
who are aware of the basics and that it is not frightening or notunderstandable to those who are newly diagnosed.

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There toolkit was presented at EU Retina formally launched to ourmembers on World Retina Day 2017. The toolkit has already been updated
and new video clips and information is added. This is the first step in RIs
objective of advocating better access to genetic testing services which isfundamental to our work and the project will be ongoing in 2018-20.
AMD On-line Tool Kit
L Hoffman-La Roche AG provided an unrestricted educational grant thatfunded the development of develop an accessible, state of the art toolkit on
AMD. This central online hub highlights the importance of improving
screening processes globally to enable early diagnosis of AMD leading toprompt access to appropriate treatment. The toolkit provides detail on thevarious stages of AMD including, early, intermediate as well as late stageand will include specific information on Geographic Atrophy. The toolkit
includes detailed information on the reality of living with these life changing
conditions and will highlight the urgent need for greater understanding andsupport. The toolkit targets a wide and varied audience of stakeholders
including the general public, at risk groups, patients and those who care forthem, medical professionals and policy makers.
Vicky McGrath was hired to project manage the development of the toolkit
along with the RI team and a global coalition of patients, researchers,scientific writers. Although contracted to work six months from June 2017
we are now in a position to extend the contract to allow for translation of
specific aspects into six languages. The toolkit was launched on November
27th 2017.
EU Projects
We are continuing to work at EU level on policy concerning research,
diagnosis and access to therapies. We are gaining expertise in regulatory
affairs and have made excellent connections with high level institutions andtheir representatives. This engagement is critical as not only does it allow
us the opportunity to capacity build but our presence means the retina isseen as a progressive community. We have the opportunity to lobby directly
to policy makers on our own objectives and potential partners can note ourability to engage and make a case for our community in a professionalmanner. This does take up time but it is useful to our membership andgives critical visibility at this stage of our development.

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These are some of the activities we are involved with:-Working with stakeholders on policy to streamline research andhealthcare in EU grant systems
Working group to develop EU Parliament Special Interest Group on
Rare Disease
Presenting data on our work and chairing working committees at theEurordis Round Table of Companies (ERTC)
Ongoing work on UN Committee of NGOs for Rare Diseases
Working with Rare Disease International
Opened discussion on the importance of supporting grants to develop
PROMs with Director General of Health at EU Commission x 2

ERN-EYE (European Reference Network for rare Eye Disease)
The ERN-EYE application was coordinated by Professor Dr. Helene Dollfus(Strasburg) and her team including Dr. Dorothée Leroux. The Core
organising committee consisted of Prof. Dollfus, Dr Leroux, Prof. Eberhart
Zrenner, Ms Christina Fasser (President) and Ms Avril Daly (CEO). TheERN was accredited by the European Commission at an event in Vilnius onMarch 9th 2017. The kick off meeting of ERN-EYE took place in Tubingen
Germany on April 3rd to 5th 2017. The CEO and president are represented
on appropriate sub-groups, the president on the retina group and the CEOin paediatrics as well as the communications and education group and thegenetics group. The president was elected as one of two patient
representatives on the overall coordinating committee. An ontology meeting
to look at the classification of rare eye disease (RED) will be held in St
Odile, France in October 2017 and will be attended by the president. TheERN-EYE represents excellent visibility as an area of innovation in the EU
putting it in prime position for funding through EU instruments but also fortransatlantic and global opportunities.
Projects planned--

Potential of working with member organisations to develop funding
cohorts for specific research questions (to be discussed at MCMeeting)Regional advocacy training programme
Online disease specific toolkits – 1st quarter LCA
On line toolkit on the development of therapies for retinal disease

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[Hier eingeben]-Youth Programme
Web-based Communications Programme
Developing Voluntary Groups and Foundations
Fundraising and Sustainability
Managing the Retina International Network of Partners

Financial Report and Forecast of RI-office
See attached document.
2.7 Work Plan 2017 – 2018
See attached document.
2.8 Web Development Plan
See attached document
Fundraising – Structure and Sustainability
As Retina International continues to operate under EU law, the manner bywhich it is funded must adhere to a particular set of guidelines for thecharitable sector which calls for transparency in funding. Diverse funding
strategies have been developed by the RI team to focus on partnerships
with, Industry, Philanthropic Foundations and increased involvement inEuropean Union Project/Operations grants.
RI attended the Black Pear Gala in Brussels which was addressed by Avril
Daly as CEO of Retina International and attended by Ms. Christina Fasser.
The audience is made up Members of the European Parliament (MEPs)
Ambassadors, First Ladies and heads of Biotechnology andPharmaceutical companies in the Rare Disease Space. The Patron of theevent is Princes Astrid of Belgium.
The next day the president and CEO attended an EU symposium on
Access to Medicines and Orphan Drugs where the CEO spoke on behalf
patients on the issue of patient reported outcomes and the ‘Value’ ofmedicine.
ERN Meetings
The First organising Committee for the ERN-EYE took place on February
26th in Zurich. The larger organising committee meeting was held in
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Strasburg on April 18th and was attended by the President and CEO. FromFebruary to June a conference call was held by the organising committee
to develop the ERN application on Tuesday evening at 5.30pm CET.
ARVO
The president and CEO attended the ARVO meeting from May 1st to 5th
2016. This included the facilitation of the RI SMAB meeting.
ECRD – European Conference on Rare Diseases and Orphan Drugs
Retina International World Congress – RIWC
EU Retina Conference Copenhagen
EU Patient Summit
UN committee on Rare Diseases:
Retina 2017
Macular and Retina Disease Congress Seville 2017
Retina International TeamDecember, 2017

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Report of the CEO
This document outlines the progress of ongoing activities undertaken by
the Retina International Office
SPARK Therapeutics have funded the development of an online toolkit ongenetic testing for IRDs. The toolkit is entitled RED Alert playing on theterm Rare Eye Disease and taking ownership of this term for RI.
The Toolkit consists of text describing the fundamentals of genetics, theevolution of testing services, the types of tests available and where they
can be accessed. There is also a section on the risk and the benefit theimportant issues to be considered and the importance of genetic
counselling services. The final section details the way in which we can work
together to advocate for better access to testing and services.
The toolkit has followed best practice and each text section is kept shortand digestible but we have included in each an explanatory accompanying
video clip in the hope that these will be of benefit to those who are vision
impaired
A survey of patients and member organisation has allowed us tounderstand the areas where there was a clear lack of information and tailor
the information to meet that need. The surveys have also shown up
worrying trends in referrals and overreliance on research grade tests.
The text has been reviewed by three scientists and one clinician. A group ofindividuals with various IRDs and a group of young mothers with noknowledge of IRDs. This is to ensure that the information is useful to those
who are aware of the basics and that it is not frightening or notunderstandable to those who are newly diagnosed.
The toolkit will be presented on beta format at EU Retina and formallylaunched to our members on World Retina Day. The sponsors are veryhappy with this timeline and have been supportive throughout the process.
2.2.3 AMD tool Kit
2.3 EU projects
2.4 ERN (European Reference Network for rare Eye Disease)

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The ERN-EYE was launched on March 9th 2017 and the Kick off meeting inTübingen was taking place on April 3rd – 5th 2017.
2.5

Projects planned-Regional advocate training programme
Youth ProgrammeCommunications Programme
On line toolkit on the development of therapies

2.62.7Financial report and forecast of RI-officeWork plan 2017 - 2018

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