Wikipedia states:

In the United States, the Rare Diseases Act of 2002 defines rare disease strictly according to prevalence, specifically “any disease or condition that affects less than 200,000 persons in the United States,”^[2] 

To give a sense of magnitude and impact, there are roughly 7,000 rare diseases and collectively they affect 300 million people worldwide. 1 in 10 people in the US suffer from a rare disease. (Source: Siren Interactive)

Coping with rare disease

Those with rare diseases can face serious challenges. Attaining a proper diagnosis can be difficult, even among the more well-known rare diseases. Symptoms are often confusing and mis-diagnosis is not uncommon.

In fact, according to the FDA, for one-third of those with a rare disease, accurate diagnoses can take one to five years. And, patients face challenges associated with finding and accessing care:

…  [patients are] often are so isolated that they may never know anyone else with the same disease. Patients often must travel long distances to visit the few doctors knowledgeable about their illnesses, and the costs involved with diagnosis, treatment, and other related expenses can be exorbitant.

With a little help from my friends

One way rare disease patients have found a way to meet their challenges is by connecting with one another online. Bensfriends.org is one such place where patients and caregivers are conversing, sharing and supporting each other.
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