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RI has 43 active members made up of patient-led voluntary groups, charities and foundations & all with the common goal of finding cures and treatments for retinal dystrophies by supporting research and innovation.
The unique and mutual benefits from a formal relationship with Retina International (RI) are the result of 42 years of sharing knowledge and resources. Becoming a member is a unique opportunity to share in our knowledge, experience, support services and blindness-related networks.
As a member of Retina International, your organisation has access to up-to-the-minute information in scientific or clinical research, fundraising, advocacy, peer support, rehabilitation and a range of others, via our conferences and newsletters. The collective knowledge of such work can only be easily shared through the existence of an organisation dedicated to international co-operation and collaboration.
Endorsement via our membership qualification criteria and use of our logo are just some of the ways we deliver support to our members. We coordinate World Retina Day, provide internationally-agreed Scientific and Medical Advice, represent the voice of patients living with vision loss at multi-national organization level (EPF, EURORDIS, IAPO, EURETINA, ARVO etc) and add our weight to all endeavours consistent with our vision and mission.
Some appreciation of the extent of Retina International’s network can be gained through this website. This network, however, is as strong as the collective resources and commitment of our member organisations. Ultimately, it is the collective efforts of these national societies that will determine our progression towards achieving our mission; “to facilitate urgently the development, and ensure the world-wide availability and accessibility, of proven treatments and cures for Retinitis Pigmentosa, Macular Degeneration, Usher Syndrome, and allied retinal dystrophies”.
RI Members
Canada – Fighting Blindness Canada
Finland – Retina Ry / Retina Finland
France – Association Retina France
Germany – PRO RETINA Deutschland E.V.
Iceland – Blindrafelagid – Retina Iceland
Ireland – Fighting Blindness Ireland
Japan – Japanese Retinitis Pigmentosa Society (JRPS)
Netherlands – Oogveregining Nederland
New Zealand – Retina New Zealand Inc
Norway – Retinitis Pigmentosa Foreningen I Norge
Pakistan – Pakistan Foundation Fighting Blindness
South Africa – Retina South Africa
Sweden – Svenska RP-Föreningen
Taiwan – Retinitis Pigmentosa Taipei
USA – Foundation Fighting Blindness
Retina International Choroideremia Committee:
The Retina International Choroideremia committee – RI CHM, is a group of volunteer patient experts who work to connect satellite groups and organisations, as well as individuals and families affected by Choroideremia. The committee works towards building a better quality of life for people living with Choroideremia through the promotion of research and equitable access to emerging therapies.
Retina International Usher Syndrome Committee:
The Retina International Usher Syndrome committee– RI USH, is a network of patient experts in Usher Syndrome who are affiliated to our national membership organistions. The network will act as a platform to support advocacy campaigns for the Usher community and to address the demand for up-to-date and reliable information on clinical trials and emerging therapies to all individuals with Usher syndrome, their families and associated medical professionals. You can read the RI-USH newsletters by clicking on this link: RI USH newsletters.
For more information about the Choroideremia or Usher Syndrome committees, please contact: avril.daly@retina-international.org
Types of Retina International Membership
To learn about the different Retina International membership options and how you can apply to be a member, please read below:
To be a full member of RETINA INTERNATIONAL, a society must show that:
- It is a charity duly registered as such under national law. It has a constitution or is a sub-group of a larger organisation, such as a society for the blind, that itself has a constitution.
- Its purposes coincide with RETINA INTERNATIONAL’s objective.
- It is a society for people living with Retinal Dystrophies including but not limited to; Retinitis Pigmentosa (RP), Usher Syndrome, Macular Degeneration and other inherited and age-related retinal dystrophies. That it includes the families and friends of affected individuals in its activities and that the society has access to sound scientific and medical advice.
- It may be a stand-alone organisation or a sub-group of an organisation for the blind. In the latter case, it must provide proof of independent activities and accept all people with retinal degenerative diseases irrespective of their stage of visual impairment. Membership should also be extended to parents/guardians of minor children with retinal conditions.
- A Scientific and Medical Advisory Board (SMAB) or committee has been constituted by the society and has been approved by the RETINA INTERNATIONAL SMAB.
- Up-to-date audited accounts have been provided to the RETINA INTERNATIONAL Board of Directors.
- A candidate member is a society which has stated an intention to apply for full membership in the future or which has already applied for full membership, but either:
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- In the opinion of the Annual General Meeting is not yet in a position to meet all the criteria for full membership, or:
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- Is a first-time applicant for RETINA INTERNATIONAL membership which apparently meets all the criteria for full membership, in which case it must serve as a candidate member for two years prior to applying for full membership.
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- Interested Groups are in the process of being organised, but it will never meet the criteria for full membership of RETINA INTERNATIONAL
- Interested group would not be in a position to ever apply for full membership on their own right for example organisations to do not have separate retinal dystrophy subgroups or are not patient led organisations.
- Associated Members include companies, scientific institutes, learned societies and funding organisations that will never be in a position to fulfil the criteria of the other membership categories of RETINA INTERNATIONAL. An associated member promotes, funds or conducts research into retinal dystrophies and is not enlisted to RETINA INTERNATIONAL through other channels.
- Associated Members will not be present at the annual general meeting unless by special invitation of the Board of directors.
- Associated Members will have no voting rights.
- Associated Members can have a seat in the SMAB where they can help influence the course of research at the request of the Board of Directors.
- Applications to become Associated Members must be approved or rejected at the annual general meeting.
- Associated Members will pay fees.
Special Interest Groups will represent regional or disease specific interest. The management of such groups must be drawn from management committees of the full members of Retina International. They must have a specific objective or a regional character and shall be approved by the Annual General Meeting.
Organisations wishing to apply for Membership shall apply in writing to RI by providing the following information:
- A letter stating that they wish to join RI and that they accept to be bound by the provisions of the constitution and the business rules;
- their legal status with a certified copy of their constitutional documents;
- their permanent address including their phone number, e-mail and any other relevant details (e.g. foreign languages spoken, office hours);
- The estimated number of member or member organisations registered in their organisation;
- A statement that they accept to pay the membership fees allocated;
A copy of their latest (audited) accounts.