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.
- 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
- When FA leaves me feeling trapped by my physical limitations