{"id":589,"date":"2014-07-01T10:29:19","date_gmt":"2014-07-01T09:29:19","guid":{"rendered":"http:\/\/s519078666.onlinehome.fr\/?page_id=589"},"modified":"2015-11-03T16:50:54","modified_gmt":"2015-11-03T15:50:54","slug":"links-stargardt","status":"publish","type":"page","link":"https:\/\/www.stargardt.fr\/en\/links-stargardt\/","title":{"rendered":"Links about Stargardt disease"},"content":{"rendered":"
\n

US associations and foundations about Stargardt disease<\/h2>\n

Foundation Fighting Blindness
\nhttp:\/\/www.blindness.org\/index.php?option=com_content&view=article&id=53&Itemid=74\u00a0<\/a><\/p>\n

NIH Office of Rare Disease Research
\nhttp:\/\/rarediseases.info.nih.gov\/gard\/181\/stargardt-disease\/resources\/1\u00a0<\/a><\/p>\n

Lighthouse International
\nhttp:\/\/www.lighthouse.org\/about-low-vision-blindness\/childrens-vision\/pediatric-eye-disorders\/stargardts-disease\/<\/a><\/p>\n

U.S. National Library of Medicine, Genetics Home Reference
\nhttp:\/\/ghr.nlm.nih.gov\/condition\/stargardt-macular-degeneration<\/a><\/p>\n

Macular Degeneration Foundation contains a good link page as well as option to get a chat channel and e-mail list.
\nwww.eyesight.org\/<\/a><\/p>\n

International associations and blogs\u00a0about Stargardt Disease<\/h2>\n

Patients groups<\/strong><\/h3>\n

RareConnect<\/strong>\u00a0is a patient-led initiative from EURORDIS and \u00a0NORD
\nA 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.
\nwww.rareconnect.org\/fr\/community\/maladie-de-stargardt<\/a><\/p>\n

RareConnect –\u00a0Patient groups partners
\nwww.rareconnect.org\/en\/community\/maladie-de-stargardt\/learn\/patient-groups\/see-all<\/a><\/p>\n

Seethroughmyeyes – Association australienne
\n<\/strong><\/p>\n

See Through My Eyes\u00a0began as a humble, anonymous blog in 2010 when Founder, Chrissy Antonopoulos, was diagnosed with Stargardt\u2019s Disease.
\nNow See Through My Eyes\u00a0is 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.
\nseethroughmyeyes.org.au<\/a><\/p>\n

Brazilian patient group<\/strong>\u00a0\u00a0(Brazil, Argentina, Portugal)
\nwww.stargardt.com.br<\/a><\/p>\n

Argentina\u00a0patient group\u00a0<\/strong>
\nwww.stargardt.com.ar<\/a><\/p>\n

International Blogs<\/strong><\/h3>\n

Australian Blog : created by\u00a0\u00a0Chrissy who lives with Stargardt disease<\/strong>
\nShe proposes lots of informations about the disease. : practical informations, curent research, personal exp\u00e9riences….She has created in 2015 the patient group ”\u00a0Seethroughmyeyes.”.
\nstargardtsdisease.blogspot.com.au<\/a><\/p>\n

Blog created by
\n<\/strong>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.
\nwww.stargardts.net<\/a><\/p>\n

 <\/p>\n

French associations and foundations for\u00a0partially-sighted people<\/h2>\n

Fondation Valentin-Ha\u00fcy, Fondation au service des aveugles et des malvoyants.
\nwww.vh-fondation.fr<\/a><\/p>\n

Association\u00a0Valentin-Ha\u00fcy, association au service des aveugles et malvoyants de France
\nwww.avh.asso.fr<\/a><\/p>\n

Association IRRP, Information Recherche R\u00e9tinite Pigmentaire
\nwww.irrp.asso.fr<\/a><\/p>\n

Institut de la vision
\nwww.institut-vision.org<\/a><\/p>\n

France choro\u00efd\u00e9r\u00e9mie
\nhttp:\/\/www.france-choroideremie.org\/<\/a><\/p>\n

Informations about\u00a0Stargardt disease<\/h2>\n

Orphanet, (rare diseases and orphan drugs
\nwww.orpha.net<\/a><\/p>\n

Orphanews, Orphanet Newsletter-France
\nwww.orpha.net\/actor\/Orphanews<\/a><\/p>\n

Informations about researches and current trials<\/h2>\n

Clinical Trials : current researches and trials
\nwww.clinicaltrials.gov<\/a><\/p>\n

Pubmed : scientific publications
\nwww.ncbi.nlm.nih.gov\/pubmed<\/a><\/p>\n