NA Advocacy USA, Inc. recently finalized a third grant to the Icahn School of Medicine at Mount Sinai in New York City for the purpose of continuing the very successful “Neuropathology of Neuroacanthocytosis Syndromes Project.” The focus of the research will be on tissue of XK patients.

You won't want to miss this important forum on a common challenge to both our VPS13A and XK patients - nutrition. If time permits, there will be a medical Q & A session. Read on for details...

The topic was focused on examining the links between Huntington's and Parkinson's diseases and neuroacanthocytosis syndromes (XK and VPS13A diseases).

Dr. Elina Tripoliti, speech therapist from University College London, and Alex Irvine, VPS13A patient, share the daily voice workout they’ve been using. It doesn’t need to be something complicated, but it’s important to do it every day.

Living with a rare disease can be psychologically and emotionally demanding. The challenges can be diverse and often complex, too. So, it’s important for everyone affected by a rare disease to look after themselves and to know where to find the right resources to help and support them.

The ever-talented Bob Metzger shares his experience with tap dancing, and how it brings him joy while also engaging his brain.

Genetic testing – how easy or complicated can it make things for someone looking to obtain an accurate diagnosis for themselves or someone related to them? We attended a series of webinars called Decoding Diagnostics that offered a lot of useful information about genetic testing. This is a summary of what we learned, and we will publish more details on our new websites coming later this year.

An inclusive festival dedicated to living with no limits was the perfect opportunity to take up a challenge and try a different kind of fundraising!

Rare Disease Day (RDD) is the globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Read on to learn more about how Rare Disease Day 2024 was celebrated by the NA community.