Welcome to
RI’s IRD Toolkit

An educational toolkit for a multi-stakeholder audience related to Inherited Retinal Degenerations.

Inherited Retinal Degenerations are a diverse group of rare eye diseases and includes Retinitis Pigmentosa, Usher Syndrome, Stargardt Disease and Choroideremia.

About This Toolkit

Millions of people all over the world are living with severe vision loss, a significant proportion of which is due to Retinal Dystrophies. IRDs also represent the primary cause of severe visual impairment or blindness in childhood and those of working age in industrialised countries. To date, more than 280 genes have been associated with IRDs, covering 60 to 70% of all cases. Work continues to discover more. For the large majority of these rare diseases no treatment is currently available, however many clinical trials are underway giving hope for the future.

The objective of this toolkit is to give you an overview of Inherited Retinal Diseases (IRDs), including descriptions of on-going research, clinical trials and new treatments of the various diseases, and associated patient advocacy. We will continually update and add to this resource as our understanding evolves. IRDs are a collection of rare retinal degenerations, such as Retinitis Pigmentosa (RP), Usher Syndrome, Leber Congenital Amaurosis (LCA), Stargardt Disease, and Juvenile Macular Degenerations.

We hope that this toolkit is useful and look forward to your feedback and suggestions. Enjoy your visit

About Retina International

Retina International is a global umbrella organisation for patient-led charities and foundations who support research into rare, genetically inherited and age-related retinal conditions.

RI believes that education leading to participation is a key driver in successful innovation.

Retina International strives to – Educate its community who in turn will be the educators of their peers, of all relevant stakeholders and decision makers and will utilise the understanding to Participate as informed actors in development of research, through the provision of advice, and perspective to all stakeholders and decision makers allowing the community to better Innovate to support and promote research for unmet need.

To learn more, visit our website: retina-international.org