Newly Diagnosed

“Alone we can do so little, together we can do so much.”

–Helen Keller

To Do List:

  1. First and foremost, it is vital to join our patient registry with Simons VIP to formally become part of our scientific community:  Click Here
  2. Contact Amber Freed at to be included in the private patient directory.  You will receive important updates and be the first to know of new treatment options.
  3. Register with various research and support groups to find community and to raise awareness on our disease.  Click Here