Neuroacanthocytosis Advocacy USA, Inc.

05/18/2026

Check it out!

Our 25th VPS13 Forum Report is now published!

A comprehensive snapshot of the science, stories, and community energy shaping this year’s progress in the community.

Dive in, share it, and stay connected!

https://naadvocacy.org/wp-content/uploads/2026/05/REPORT-25th-VPS13-Forum-27-Apr-2026.pdf

02/28/2026

Great to see our sister organization featured. Always grateful to them for including our logo. ❤️

02/28/2026

02/26/2026

Extra! Extra! Read all about it! 50th Anniversary Edition of the NA News!

50 Editions Strong | $73,000 Raised | New Research Puerto Rico | 12 Symposium Proceedings | 24 VPS13 Forum | Research Advisory Committee | XK Blood Donation | Patient Fundraiser | Strategic Plan | Partners in Progress | Seeds of Support | New Trustees

02/18/2026

⏰ The countdown is on: just 10 days until Rare Disease Day!

There’s still time to get involved! Join a local event, share your story online, or light up your home/office to show your support for the rare disease community!

🌍 This global day is about awareness, solidarity, and action. Every post shared, every event attended, and every light that shines helps make the rare visible and reminds us that we are stronger together.

Learn more about how to participate, find events near you, or access campaign materials: https://go.rarediseaseday.org/RDD

Let’s make this year’s Rare Disease Day more than you can imagine. 💪

02/16/2026

We’re proud to share new research presented by Cristal Alicea Malavé at the 6th Pan American Parkinson’s Disease and Movement Disorders Congress in Houston, 13-15 February 2026.

See Cristal (left) and Professor Ruth Walker (right) next to the poster which was registered as a late-breaking abstract. The team explored why VPS13A disease (chorea acanthocytosis) appears more common in Puerto Rico than expected for such a rare condition.

They identified 17 patients from 14 families and found that three specific genetic variants keep recurring in Puerto Rican families. As the abstract notes, “The 3 recurrent variants can be considered as ‘founder mutations’ and have likely been present in the population for many years.”

This work helps families reach a diagnosis sooner and strengthens awareness of VPS13A disease across the Americas.

Please share to help raise awareness.

Read all the late-breaking abstracts here:https://www.pascongress.org/PAS26-LBAs.pdf

01/31/2026

Interesting piece on how the US healthcare system lags behind many other countries, especially concerning timely diagnosis of rare diseases. Many if not most of us have personal experience with this exact problem.

Explore the challenges faced in US healthcare for patients with rare conditions and how global models can enhance care.