National Organization for Rare Disorders

The customer service experience that I have had thus far is horrible! I have recorded conversations of the customer service representatives that have talked to me in such an ugly way because they don’t understand the disease that I have is so rare and they don’t even have any grant money for the disease because the disease isn’t even on their register. Nor are they trying to help me figure out how to get my disease, which is a rare genetic disorder on their registry so that it could get funding for not only myself, but others who also have this rare genetic disease. I’m furious because my doctor who’s a known neurologist here in Louisiana Dr. Gerald Calegan referred me to these people for a NORD grant which they don’t even have because I’m being told my disease doesn’t exist in their registry and they don’t have any funding for it. Which is OK, but why not help me create some type of platform with you all to get my disease out there so that other people who may have the same disease can reach out to NORD for help!?… I’m so disappointed and every time I call back, it’s an excuse about why I can’t speak to anyone.

As someone with a Rare disease, this organization knowledgeable, and helpful, but..I wish there were support groups in Prince Wm. County, VA where I live.

What an amazing organization. They are friendly and helpful. They are really knowledgeable and great people and want to help all of those with Rare diseases.