get involved



Through donations received from generous supporters, the UPA plays a vital role in helping those affected by this rare disease, learn about and understand it, find healthcare experts, understand the different treatment options, discover tips to help manage symptoms, have questions answered, receive emotional support and so much more.

Whether you give or raise $5 or $5000, we hope you will be inspired because you will have a positive impact in the lives of people affected around the world.

Because you will make a difference!


Donate Now!