Our Advocacy Work

RI is a global umbrella of 33 patient-led charities and voluntary groups funding & supporting research into rare and genetically inherited as well as age-related forms retinal dystrophies.

A core objective of RI is to develop capacity building tools that will build a united and educated community that is equiped s to advocate with confidence for better investment in research and the infrastructures that support it, for access to genetic testing, a more approrpiate clinical trial process and for our ultimate global, equitable access to therapies for retinal dystrophies, 

RI fosters and supports collaborations between patients, clinicians, researchers, policy makers and industry in the development of educational tools and awareness campaigns that will bring about a better quality of life or individuals and families affected by Retinal Dystrophies.

Promoting the establishment and development of patient-led organisations in countries in which such societies do not already exist is integral to the growth of a well-informed patient community. RI is here to help emerging organisations set clear goals and to realise them. 

If you wish to become involved with Retina International as an advocate for positive change, we want to hear from you. Working together we can go a long way towards coordinating the global voice of patients affected by retinal degenerative diseases to be effective actors in their health care choices now and into the future.

How we advocate

RI believes that all stakeholders should be included in developing the tools necessary to provide a better understanding of complex rare, genetically inherited & age related retinal diseases. We have successfully developed communications tools that reach out to patients living with IRDs and age-rlated forms of vision loss and have brought together a multistakeholder group of internationally based advocates.

Over four decades RI has formulated specific capacity building projects to develop advocacy tools for the delivery of existing and emerging care and support patients regionally, nationally and globally.

RI recognises the value of working to better engage patient representatives in all aspects of research and therapeutic development and we are currently building on experiences already gained or currently being learned as the participation of patients becomes mainstream in the lifecycle of therapies and the regulatory process.

We want to ensure that all our members, wherever they are based can be involved as informed actors in decsions that will affect thier future.

Areas we work in

Infrastructure Development around:

  • Genetic Testing

  • Data Protection

  • Patient Registries

  • Clinical Trials

Regulatory Frameworks:

  • Health Technology Assessments

  • Off-label Medicines

  • Access to new medicines

  • Reimbursement

Who we work with:  

  • The Membership: long standing as well as new and emerging groups

  • The Scientific community: continued collaboration with the SMAB and also with learned societies and professional bodies

  • The Medical Community: societies representing clinicians and allied health professionals in global ophthalmology and genetics

  • The Regulators: state agencies and policy makers

  • The Industry: Industry and Corporate partners

RI has developed a mutually supportive global community that understands the challenges that lay ahead and is ready to face them. Members of RI have the knowledge and understanding to be effective actors in the delivery of their healthcare now and into the future. As potential for life changing treatments  emerge, RI and the patient led organisations we servs will continue to work with all stakeholders to build a bridge to a bright future we can all share!

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