One Simple Thing You Can Do for Rare Disease Day 2013

This international event seeks to foster cooperation and encourage research on behalf of people with rare diseases — and here's one way you can do just that

Article Highlights:
  • International Rare Disease Day is Thursday, Feb. 28, 2013. This year’s theme, “Rare Disorders Without Borders,” seeks to raise awareness of the devastating and isolating impact that a rare disease can have on the lives of individuals and their families.
  • The Rare Disease Day 2013 website features photos, videos and personal stories from people with rare diseases around the world — and visitors are invited to upload their own to the site.
  • One important, concrete step you can take to commemorate Rare Disease Day is to speak up in support of the MD CARE Act, existing legislation that is up for reauthorization this year. The Act provides government support for research and education focused on muscular dystrophy.
by Quest Staff on February 26, 2013 - 5:00am

In the United States, a disease or disorder is defined as “rare” when it affects fewer than 200,000 Americans at any given time; in Europe, when it affects less than one in 2,000 people.

Clearly, we’re talking about very small numbers of people. But put them all together, and the numbers tell a different story. More than 6,000 rare diseases affect more than 60 million people in Europe and the U.S. alone — some 100 million people worldwide.

The sixth international Rare Disease Day — to be held on Thursday, Feb. 28 — is a reminder of the importance of tackling rare diseases from an international perspective. This year’s theme, “Rare Disorders without Borders,” seeks to raise awareness among the general public and decision-makers about these diseases and their impact on the lives of patients and their families.

Fighting diseases that affect only a few people in each country, and for which expertise is scarce and scattered, requires cross-border cooperation. Advances in rare-disease research have better chances of succeeding when researchers from different countries work together to understand the disease and search for therapies. Financially, resources for research go further when pooled with funding from various countries.

For more information, visit the Rare Disease Day website, where you'll find photos, videos and personal stories from people with rare diseases around the world. There, you'll also have an opportunity to upload your own. 

One simple thing you can do for Rare Disease Day

One important action you can take to commemorate Rare Disease Day is to participate in MDA’s Take 5 advocacy program, a legislative initiative that combines and amplifies the voices of small groups of individuals with rare neuromuscular diseases.

MDA is currently urging the neuromuscular disease community to speak up in support of the MD CARE Act, important existing legislation that is up for reauthorization this year. The Act provides government support for the expensive research infrastructure necessary to get a new MD drug approved and on the market.

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