By Roger Chriss, PNN Columnist

This coming Saturday, February 29 is Rare Disease Day worldwide. The day recognizes thousands of rare diseases and disorders that together impact millions of people worldwide, both patients and their caregivers.

The goal of the day is to raise the profile of the rare disease community and to spread the word: “Rare is many, rare is strong and rare is proud!”



According to the National Organization of Rare Disorders (NORD), there are over 7,000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening. Many rare diseases are familiar to chronic pain patients, from Trigeminal Neuralgia and Chiari Malformations to Porphyria and Ehlers-Danlos syndrome.

A disease is considered rare in the U.S. when it affects fewer than 200,000 people, while in Europe a disease is rare if it affects fewer than 1 in 2,000 people.

Because there are so many disorders, a total of 300 million people worldwide are thought to be affected by rare diseases. And though each disease is unique, many share common features like chronic pain and limited mobility, and require complex medical care.



Events are planned throughout the week leading up to February 29. NORD is hosting a variety of events, including a gathering at the International Spy Museum in Washington, DC on Saturday.

The FDA held a public meeting on Monday to update stakeholders in the rare disease community on the agency’s efforts to improve treatment for rare diseases. That includes a new request for applications to its Orphan Products Grant Program, which funds clinical trials of so-called “orphan” drugs that could potentially be used to treat rare diseases.

The National Institutes of Health is coordinating panel discussions on Friday, February 28 in Bethesda, MD to improve diagnosis and treatment, expand clinical trial resources, and increase awareness of rare diseases.



In all, NORD lists over 400 events in 106 countries marking Rare Disease Day, including conferences, research presentations, exhibits, walks, rallies and a variety of fundraisers.

Rare Disease Day started in 2008 with the first events held in Canada and Europe. The date February 29 was chosen because it is rare (Rare Disease Day is on February 28 in non-leap years).