Leading the Way to Treatments Begins With You

As someone affected by chromosome 8p disorders you have the power to help advance research to better understand these disorders and find treatments. Your voice and the data that you contribute can help identify and answer the questions that matter most.

Why should I participate in the Chromosome 8p registry?

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