Twelve of the most notable experts in the fight against this disease share, in their own unedited words, their views on the state of the disease. This unparalleled collection of messages from leading experts is a priceless read to understand the disease both today, and tomorrow.
If you have a rare disease it’s likely you’ll encounter medical professionals who have never heard of your condition. Therefore, it’s a good idea to always be an active member of your health care team. Guest blogger Lori Grover shares seven important ways you can self-advocate.