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 06-2
6.2 Retina International Secretariat and president' s office: Work plan
2018-2020: Objectives, mile stones and outcomes (appendix 06-2)
Overview
Retina International is governed by the management committee and thepresident who are in turn supported by a part-time staff member (25 %).
A full time CEO works on the delivery of the agreed work plan with thesupport of a part time project manager and will recruit a part time
Science Communications Officer in 2018. The MC, president and CEO
work with the help of sub-committees in the area of research,membership, fundraising, audit and financial oversight, human resources
and marketing.
A mid-term meeting of the MC was held in September 2017 in Barcelona
Spain, an MC meeting will also take place during the RIWC in February
2018. As the next RIWC will take place in September 2020, it is
proposed that a midterm meeting of the MC should be held in March2019 where all relevant matters will be discussed and the workplan andstrategy reviewed. At these meetings the work in progress will beassessed and the targets readjusted if necessary.
The work in progress covers the following areas:
1.
2.
3.

Sustainability of Retina International office through fundraising
MembershipResearch

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4.
5.
6.
7.
8.
9.

Communication and marketing
Capacity building
CongressesConstitution and policy
YouthFinances and administration

Detailed work plan1.

Sustainability of Retina International office

Objective
To develop and appropriately manage and grow the RI Office thenext three years in order to achieve its objectives.
Actions
To establish a strategy and working plan following discussion with
the MCActivities
Work to assure the sustainability of RI through the development ofa robust financial strategy as well a comprehensive workplan thatwill be developed with the MC, president and CEO for presentation
at GA 20
2.

Membership

Objective
Keep contact with existing membership and stimulate new memberorganisations
ActionReinforce relationship between Retina International and its
member organisations by providing the appropriate support andservices
Pay attention to issues that may arise with existing members astechnologic advances in retinal research and development
continues to growTarget Latin America and South-East Asia in order to attract new
member organisations.
Target areas in Europe that do not currently have representation
by a patient organisation.
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3.

Research

Objective
To promote, stimulate and support the progress of research anddevelopment in retinal degenerative diseases
Actions
Maintain close co-operation with Retina International SMAB
Organise annual SMAB meeting in co-operation with the chair ofthe SMAB
Disseminate on-going research and latest research results
Where appropriate help to facilitate the development and fulfilmentof multinational treatment trials in inherited retinal diseases throughearly dialogue and collaboration with stakeholders
Cooperate with new and existing industry partners in the field oftranslational research for IRDs
Support projects and ongoing activities with EU and similar
government funding agencies and organisations in Australia andNew Zealand, Asia, Latin America and USA as well as Africa.
Participate in European Patient Forum (EPF)
Cooperate with global rare diseases organisations such as Rare
Disease International and its partners.
Where appropriate cooperate with learned societies andinstitutions such as ARVO, ESHG, EURetina, DIA, EMA and FDAetc.
Cooperate with ongoing research projects as advisors andrepresenting the view of patients
Support research initiatives and consortia during grant application
as well as evaluation processes

4.

Communication and marketing

Objective
Establish Retina International as the leading organisation forsupporting research in retinal degenerative diseases and providing
patient information
Actions
Develop and implement a process for the dissemination of themost up to date news, views and information through IT platforms,
newsletters and mail outs,
Develop a process to regularly update the RI website for maximum
impact and to attract regular visitors
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-Develop and implement a Social Media policy
Through membership develop a cohort of contributors to provide
information to the site including Wikis and Blogs
Implement a simple process to respond in a timely fashion topersonal enquiries
Publish Retina International statements and press releases for use
by member countries
Develop a cohort of key opinion leaders drawn from themembership, SMAB and learned societies to opine on
developments within the research and development space
Develop and implement a house style to be used in allcommunications materials to ensure accessibility and brandidentification--Capacity building – Education and Outreach5.

Objective:
To facilitate the upskilling of Retina International Members throughthe development of bespoke capacity building and bespoke
education programmes at a time of significant activity in retinal
research and innovation development
Actions:
RI is seeking funding for specific projects that are highlighted as aneed by our membership this include ongoing projects listed andfuture topics---

Patient Reported Outcome Measures Project - PROMs
A preliminary multi stakeholder meeting on PROMs took placein Dublin, Washington DC and Baltimore MD in 2015/2017 workongoing to have paper prepared for publication in 2018.
Work will continue in developing patient advocates to participate
in ERN-EYE (European Reference Network for rare eyedisease. Representation of RI community across committees.
Resources need to be sought to develop education andcommunications tools for patients and their families – these will
benefit global community.
Ensure that toolkits such as Genetic Testing Toolkit and AMD
Toolkit are kept updated and current.
Development of Community Advisory Boards one in AMD one inIRDs to work with industry partners.

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-Development of the Retina International Network of Partners(RINP)
Seek further funding for educational toolkits such as:

5.1a)
b)
5.2a)
b)
c)
5.2c)
d)
5.4e)
f)
5.5a)

Understanding Retinal diseases
Rare and genetically inherited eye diseaseAge related common eye diseases
Infrastructure Development around:
Genetic Testing (ongoing)
Clinical Trials
Patient Registries
Regulatory Framework
Health Technology Assessments
Off-label MedicinesLegislation and Policies
Access to new medicines
Reimbursement
Woking with Industry
Community Advisory Boards

6.

Congresses

Objective
Organise and support the Retina International World conference
2020Actions
6.1 Congress 2020 – Iceland
Accept business plan
Accept budget & costs
Assist with the development of the program, the identification andapproach to speakers with recourse to advice and approval ofRetina International Scientific and Medical Advisory Board
Composition of Continuing Education Program, General Assemblyand project meetings
6.2-Congress 2022
Define strategic targets for 2022 conference
Support the organiser 2022 in establishing business plan,
speakers program, allocation and financing as set out in congress
rules

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6.3-Congress 2024
Work with members potentially ready to apply for the conference at
the GA 2020
Work with members in development of promotional tools andmaterials for congress.

7.

Constitution and policy

Objective
Take up procedures that need clarification in policy orconstitutional matters
Actions
Regular overview of present policies and formulation of newpolicies that may be needed in light of the status of the secretariat
Develop guidelines and auditing procedures to guarantee correctand smooth running of the affairs
Be mindful of new and development governance practices in theNGO/Charitably sector to ensure compliance at all times
8.

Youth

Objective
To stimulate young leadership among Retina International
membership and within Retina International
Actions
Review the youth membership and establish how/why certain
countries are in a position to attract youth involvement over others
Work with MC and targeted youth leaders to develop a youth
strategy that takes their opinion and needs into consideration andappoint a youth leadership team that will liaise with MC point ofcontact
Work with member organisations to establish and support anofficial youth contact in each country
Provide youth information on Retina International website & link toyouth website
Encourage Member Organisation to include youth meetings tocoincide with their meetings and congress as is the case at RIWC
9.

Finances, Administration & HR

Objective
Guarantee the functioning of Retina International activities
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Actions
Oversee & collect membership fees
Evaluate continuously the fee structure and impact on members
Develop budget for next period in conjunction with the MC,president and CEO
Maintain and develop RI membership database and administrative
infrastructure
Work with the RI Scientific and Medical Advisory Board inorganising the SMAB meeting
Assist the MC in organising meetings
Work with MC sub-committee, president and CEO when neededon HR issues particularly in any future recruitment to fulfil growing
officeWork with the MC to assure the challenge of future generation
change within the RI leadership.
December 5, 2017

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