US associations and foundations about Stargardt disease

Foundation Fighting Blindness
http://www.blindness.org/index.php?option=com_content&view=article&id=53&Itemid=74 

NIH Office of Rare Disease Research
http://rarediseases.info.nih.gov/gard/181/stargardt-disease/resources/1 

Lighthouse International
http://www.lighthouse.org/about-low-vision-blindness/childrens-vision/pediatric-eye-disorders/stargardts-disease/

U.S. National Library of Medicine, Genetics Home Reference
http://ghr.nlm.nih.gov/condition/stargardt-macular-degeneration

Macular Degeneration Foundation contains a good link page as well as option to get a chat channel and e-mail list.
www.eyesight.org/

International associations and blogs about Stargardt Disease

Patients groups

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.
www.rareconnect.org/fr/community/maladie-de-stargardt

RareConnect – Patient groups partners
www.rareconnect.org/en/community/maladie-de-stargardt/learn/patient-groups/see-all

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.
seethroughmyeyes.org.au

Brazilian patient group  (Brazil, Argentina, Portugal)
www.stargardt.com.br

Argentina patient group 
www.stargardt.com.ar

International Blogs

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.”.
stargardtsdisease.blogspot.com.au

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.
www.stargardts.net

 

French associations and foundations for partially-sighted people

Fondation Valentin-Haüy, Fondation au service des aveugles et des malvoyants.
www.vh-fondation.fr

Association Valentin-Haüy, association au service des aveugles et malvoyants de France
www.avh.asso.fr

Association IRRP, Information Recherche Rétinite Pigmentaire
www.irrp.asso.fr

Institut de la vision
www.institut-vision.org

France choroïdérémie
http://www.france-choroideremie.org/

Informations about Stargardt disease

Orphanet, (rare diseases and orphan drugs
www.orpha.net

Orphanews, Orphanet Newsletter-France
www.orpha.net/actor/Orphanews

Informations about researches and current trials

Clinical Trials : current researches and trials
www.clinicaltrials.gov

Pubmed : scientific publications
www.ncbi.nlm.nih.gov/pubmed

• In France

Inserm, institut des neurosciences de Montpellier (France)
http://www.inmfrance.com/inm/

Cnrs
www.cnrs.fr