Rare Disease Day 2023
A Conversation With Rare Disease Advocates
Join host Kevin Schaefer as he talks with three of his coworkers about their experiences, pitfalls, and triumphs of living with their respective conditions.
Recent Posts
- MDA 2023: No new cardiac or liver findings evident with Skyclarys use
- Abnormalities in sensory nerve cells tied to loss of coordination in FA
- FDA Approval of 1st FA treatment is a reminder of my mission
- Reminding myself that I’m worthy of love, even with Friedreich’s ataxia
- Assay determines presence of FA by measuring frataxin protein in blood
- Am I living a disabled life, or am I living life with a disability?
- FDA approves omaveloxolone, now Skyclarys, as first FA treatment
- A patient’s perspective on the 1st Friedreich’s ataxia treatment
- Rare Disease Day recognition gives me hope on my journey with FA
- Specialized motion-capture suits may help predict FA progression