- Celebrate Rare Disease Day with HDSA on February 28th
- Teva Announces FDA Approval for Austedo-XR
- Survey on Digital Data Collection
Celebrate Rare Disease Day with HDSA on February 28th
When you have a rare disease, you face two battles – one being the illness itself, and the other, living in a world where so few people understand what you’re up against. The Huntington’s community is no stranger to these battles, but we also know firsthand that while we may be rare, we are mighty and we are getting stronger together each day. Tuesday, February 28th is Rare Disease Day 2023, and HDSA is joining forces with individuals from over 7,000 rare diseases affecting 300 million people worldwide to raise awareness about rare disorders like HD. Check out https://www.rarediseaseday.org/ to learn more about the rare disease community and the events happening worldwide. Visit www.hdsa.org/rarediseaseday to join us in turning up the global volume for Huntington’s disease awareness and to support HD research and world-class HD resources for families across the country.
Teva Announces FDA Approval for Austedo-XR
Last week, Teva Pharmaceuticals received FDA approval for Austedo XR for treatment of chorea in people with HD and people with Tardive Dyskenesia (TD). AUSTEDO® (deutetrabenazine) was initially approved by the FDA in April of 2017. This drug, called a VMAT-2 inhibitor, interferes with how dopamine messages are passed between neurons in the brain to reduce symptoms of chorea in people with HD. Austedo XR is an extended-release formulation of the same drug. This means that people prescribed Austedo will have the option of taking the drug only once per day instead of twice per day, which could make treatment adherence easier. To learn more, click here.
Survey on Digital Data Collection
Regeneron Pharmaceuticals is conducting a survey about the use of digital data collection technology during clinical trials, such as on a home computer, device, or phone. Their goal is to incorporate input from people with HD and other diseases to understand their comfort level with this type of data collection, and improve participants’ experience during clinical trials. This survey is open to people with HD, their partners, and those who care for them. Please click here to participate. You will be taken to a consent form which will lead to the survey. To check out other research opportunities you can take on from home, click here.