You Are Not Alone!
According to the Genetic and Rare Diseases Information Center funded in part by the NIH, a rare disease is defined as a condition that affects fewer than 200,000 people. This definition was created by Congress in the Orphan Drug Act of 1983. Rare diseases became known as orphan diseases because drug companies were not interested in adopting them to develop treatments. There may be as many as 7,000 rare diseases. The total number of Americans living with a rare disease is estimated at between 25-30 million. This estimate has been used by the rare disease community for several decades to highlight that while individual diseases may be rare, the total number of people with a rare disease is large.
When you have a disease that affects between five to ten per million, like Cushing’s disease, you can feel alone and isolated – like no one understands. Fortunately there are several large non-profit organizations that umbrella all rare diseases. They can be a great resource for you.
Resources for Patients and Families
As you learn more about Cushing’s, you may find these additional resources helpful:
- Cushing’s Support and Research Foundation
- The Pituitary Society
- University of Pennsylvania – Penn Medicine
- National Institute of Health
- The Pituitary Network
- Cortisol Matters Website
- Cortisol Matters Flashcard
Connect with others in the community on Facebook [private groups]:
Looking for more resources? Check out the past email newsletters from Kick Cushing’s!