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Why We Join Together for Rare Diseases

2014 February 20
by Allsup

NORD_Logo_2012By Megan Barron, Social Media Coordinator, National Organization for Rare Disorders

 

 

You may think that having a rare disorder means dealing with very specific and unique problems and that no two disorders are alike.

Though different rare diseases impact patients and families differently, the rare disease community has come together around the world to raise awareness for the shared difficulties that come with living with any rare disorder.

With this solidarity, we commemorate Rare Disease Day, annually celebrated on the last day in February as an international day of hope.

On Feb. 28, Rare Disease Day brings awareness to the unmet needs of the 30 million Americans and millions more across the world living with rare diseases.

A rare disorder is one affecting less than 200,000 people in the United States, to date; the NIH has identified nearly 7,000 such diseases. Combined, 1 in 10 Americans has a rare disorder. That is 1 in 10 Americans who typically struggle to get access to expensive treatments, if effective remedies exist at all.

Two-thirds of those Americans are children who rely on Rare Disease Day to shine a spotlight on their hope for a brighter future.  

This year marks a special Rare Disease Day with the theme “Join Together for Better Care.” In the rare disease community, we recognize that each family, every patient story and every policy success has a host of people in the wings that have made it possible.

Maybe there was a home health nurse who went above the call of duty, or a case manager who helped ensure coverage for an expensive medicine; these are just a few examples of the unsung heroes to whom we dedicate Rare Disease Day 2014.

Six years ago, NORD partnered with EURODIS to become the official U.S. sponsor of Rare Disease Day, and our efforts to bring awareness have grown ever since.

NORD has several events planned including:

  • State house events for rare disease advocates, the media and the public to bring awareness to legislators in several states.
  • Awareness events at major universities and research institutions, such as Rutgers and the Sanford Children’s Health Research Center.
  • An online Tweet chat Tuesday, Feb. 25, with Dr. Richard Besser of ABC News.
  • The Handprints Across America photo gallery for individuals to share their story
  • Online tools and resources for people to plan events in their own community.

To learn more about everything NORD has planned for Rare Disease Day 2014, visit rarediseaseday.us. Share your support and enjoy the fun as we “Join Together for Better Care.”

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