What is Rare Disease Day?

Описание: Rare Disease Day is dedicated to bringing widespread recognition of the challenges faced by people living with rare diseases. There are nearly 7,000 rare diseases and -- though each alone is considered rare -- together they affect nearly 30 million Americans, about one in every 10 people. Two-thirds of these are children.

People living with rare diseases often experience devastating medical problems and symptoms. Some spend years seeking a diagnosis, and many feel alone and isolated as they struggle to find information and connect with others like themselves.

This year, Rare Disease Day is observed on February 28th and the theme is "Living with a rare disease," paying tribute to the millions of families, friends and caregivers whose daily lives are impacted by rare diseases and who are living day-by-day, hand-in-hand, with people living with a rare disease.

From the doctors and nurses who provide care on a daily basis to every patient advocate taking a stand. For every parent looking tirelessly for information and every case manager fighting an access battle, this day brings recognition to their efforts.

The National Organization for Rare Disorders (NORD) is proud to be the official U.S. sponsor of Rare Disease Day. Together we work toward the goal that no patient should go without, no matter how rare a condition may be. We also recognize the exciting advancements in medical research and policy developments that are expanding hope in the rare disease community.

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.