Achromatopsia incomplete- X-linked Archives

NuEyes: Using Virtual Reality to Improve Vision for Achromatopsia, Congenital Nystagmus & Macular Degeneration Patients

Post author:Trudy Horsting
Post published:June 7, 2019
Post category:Achromatopsia 3 / Achromatopsia incomplete- X-linked / Alopecia macular degeneration growth retardation / Hypotonia- congenital nystagmus- ataxia and abnormal auditory brainstem response / Juvenile macular degeneration and hypotrichosis / Rare Disease
Post comments:0 Comments

An Idea Sometimes life leads us down unexpected paths. Mark Greget founded a medical device distribution company. That was his plan. But after interacting with patients through his work, he…

Enrollment Completed in Achromatopsia and Retinitis Pigmentosa Clinical Trials

Post author:Trudy Horsting
Post published:April 11, 2019
Post category:Achromatopsia incomplete- X-linked / Retinitis pigmentosa
Post comments:0 Comments

ACHM and XLRP Achromatopsia (ACHM) is a rare, inherited retinal disease which causes impaired cone photoreceptor function. Patients experience light sensitivity so extreme that it can cause blindness during the…

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

SIGN UP FOR OUR NEWSLETTER
Email Address

Let’s Work Together!

Keep Up to Date

Learn More