Rare disease is anything but rare. In fact, one in 15 people worldwide could be affected, according to the World Health Organization (WHO). Yet, for patients and their loved ones, the experience of living with a rare disease can be isolating.
The total number of Americans living with a rare disease is estimated at between 25-30 million.
While approximately 7,000 rare diseases have been identified, very few of them have any approved treatments. The majority of these diseases are not well understood, and often, it’s up to the patients to organize their communities so that their disease can be studied. We believe that when patient communities work together, they can advance research and bring us closer to curing, preventing, and managing all rare diseases.
We’re providing shared tools, training, and capacity-building resources to help them in their efforts.