IMPORTANT: This is a new action! Even if you’ve already contacted your congressional representatives about establishing the patient registry, please also take this action targeted at Congresswoman Nita Lowey (D-NY 17th District) and Congresswoman Rosa DeLauro (D-CT 3rd District).
How to Read Data and Studies
Many patients and caregivers want to learn more about the diagnosis, looking to research studies and other data, but these studies are scientific and sometimes
