We will not be successful in finding treatments unless we know who the affected individuals are, what their diagnosis is, and how the disease is affecting the individual. In a rare disease with many unique differences, every person must be included. By registering, you will receive information to help you:
- Store all your medical reports in one place.
- Share those records with your healthcare providers anytime and anywhere with an Internet connection.
- Manage your medical care and allow you to view comparison of other participants in an aggregate de-identified manner.
- Receive information about available therapies when they become available
- Benefit from an online support community
- Stay updated about conferences and events
- Learn about relevant scientific publications