Our information specialists are professionals who help patients and their family members learn what their diagnosis means. They are here to answer questions about your disorder, talk with you about the treatment options, help your find an expert and locate resources that can help ease the burden of treatment. The specialist's role is to listen, support and guide you as you learn to live with a chronic life-altering disease.
We understand that being diagnosed with a rare disease can feel very isolating. Through our Peer Support Network, our information specialists can connect you with other patients. Talking with another patient can help ease your mind, and it's a way to make a new ally who truly understands what you're going through.
To speak with an information specialist, please call (800) 747-2820 press option 1 or email firstname.lastname@example.org Remember, you are not alone. We're here to help and support you.