Achromatopsia 3 Archives - Patient Worthy

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

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…

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!

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

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story

Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes

We Need Equity and Diversity Within Rare Disease Research

DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1

Bridging the Diversity Gap in Healthcare

Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

Let’s Work Together!

Keep Up to Date

Learn More