US associations and foundations about Stargardt disease
Foundation Fighting Blindness
NIH Office of Rare Disease Research
U.S. National Library of Medicine, Genetics Home Reference
Macular Degeneration Foundation contains a good link page as well as option to get a chat channel and e-mail list.
International associations and blogs about Stargardt Disease
RareConnect is a patient-led initiative from EURORDIS and NORD
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
RareConnect – Patient groups partners
Seethroughmyeyes – Association australienne
See Through My Eyes began as a humble, anonymous blog in 2010 when Founder, Chrissy Antonopoulos, was diagnosed with Stargardt’s Disease.
Now See Through My Eyes is a not-for-profit organisation established for the purpose of improving the quality of life for people who are vision impaired and blind with a particular focus on the advancement of educational and career opportunities. See Through My Eyes also provides information and support to people who are vision impaired and blind, their carers and families whilst undertaking systemic advocacy to raise awareness of the issues impacting people who are vision impaired and blind in the community.
Brazilian patient group (Brazil, Argentina, Portugal)
Argentina patient group
Australian Blog : created by Chrissy who lives with Stargardt disease
She proposes lots of informations about the disease. : practical informations, curent research, personal expériences….She has created in 2015 the patient group ” Seethroughmyeyes.”.
Blog created by
StargardtsNet will be the “home” for anyone who has an interest in Stargardt’s Disease – those who have the disease as well as those who know someone who has the disease.
French associations and foundations for partially-sighted people
Fondation Valentin-Haüy, Fondation au service des aveugles et des malvoyants.
Association Valentin-Haüy, association au service des aveugles et malvoyants de France
Association IRRP, Information Recherche Rétinite Pigmentaire
Institut de la vision
Informations about Stargardt disease
Orphanet, (rare diseases and orphan drugs
Orphanews, Orphanet Newsletter-France
Informations about researches and current trials
Clinical Trials : current researches and trials
Pubmed : scientific publications
- In France
Inserm, institut des neurosciences de Montpellier (France)