Скачать или смотреть What is it like to have a rare disease?

Any disease that affects fewer than 200,000 Americans is considered rare.

In addition to facing devastating medical problems and symptoms, people who suffer from a rare disease face a number of challenges:

· Difficulty getting a clear diagnosis
· Limited availability of information on their condition
· Few or no treatment options due to the rarity of these conditions

These individuals often feel alone and have difficulty finding and connecting with others like them.

As awareness and recognition of rare diseases increases, there is a growing number of patient organizations and programs to help those with specific rare disorders. For example, the Voices of MPN™ program was developed to shine a light on myeloproliferative neoplasms (MPNs) -- a rare group of potentially deadly blood cancers -- to help educate, empower and connect those affected by these conditions.

The National Organization for Rare Disorders (NORD) is an umbrella organization representing all people affected by rare diseases. NORD and its more than 200 member organizations are committed to improving the lives of individuals and families affected by rare diseases.

NORD is proud to be the official U.S. sponsor of Rare Disease Day, a day dedicated to bringing widespread recognition of the challenges faced by people living with rare diseases. Rare Disease Day is February 28, 2015.

Alone we are rare. Together we are strong.™ Visit www.rarediseaseday.us and show your support by liking the Rare Disease Day Facebook page and following the Twitter feed where we encourage you to share your thoughts and experiences — because together we can make a difference.