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World Rare Disease Day

 

Rare Disease Day Logo

World Rare Disease Day
Sunday, February 28, 2010

 Genes for Jeans


Did you know that an estimated 30 million Americans are affected by a rare disease?!  Special challenges face those with a rare disease, in getting a diagnosis, gaining access to appropriate treatment, finding support resources, and in advancing essential research.

Alone we are Rare. Together we are Strong.

Rare Disease Day is an annual event observed worldwide on the last day of February, to raise awareness of rare diseases as a public health issue.  Rare Disease Day on February 28, 2010, will also celebrate the special relationship between patients and rare disease researchers.

Groups around the globe are beginning to strategize their advocacy and awareness efforts in support of World Rare Disease Day 2010.  This year the rare disease community worldwide will support efforts around the theme: 

"Patients & Researchers: Partners for Life."

The National Organization for Rare Diseases (NORD) is the sponsor of Rare Disease Day in the United States, and EURORDIS is the sponsor in Europe. 

Goals for Rare Disease Day 2010 include:

  • Extensive media coverage
  • Social networking blitz
  • Creating a Rare Disease Physician Database
  • Sharing patient stories, videos, photos, and blogs
  • Honoring researchers through the Hall of Fame
  • Joining hands with others worldwide

Mark your calendar now, and join hands with others affected by rare diseases to raise awareness of how families are affected by the diagnosis of a rare disease.  Visit NORD's Rare Disease Day site for ideas on ways to get involved.

Genes for Jeans logo  

Denim & Genes

One way to get involved in World Rare Disease Day is to sponsor a
"Denim & Genes" event. 

This event might be a special day at the office, where staff members each pay $5 (or more) for the "right" to wear jeans to work that day.
Or it might be a pizza party with friends, where everyone wears denim -- maybe even with a theme, such as "1950's greaser jeans" or "1970's bellbottom blues."


The Global Genes Project, creator of the "Denim & Genes" campaign, is a "Children's Rare Disease Campaign .... a grassroots effort with a simple goal: Increase awareness for the prevalence of rare diseases and help those affected by them. While each disease may be rare when considered by itself, together they negatively impact the lives of millions of children and adults."

Visit the Denim & Genes page for more ideas about organizing an event to raise awareness and funds.

Faces of Rare Disease Day 

Patients and families interested in sharing their stories to promote awareness may send messages of 250 words or less (about one page) to rarediseaseday@rarediseases.org.  If NORD has opportunities to share these stories with the media, now or in the future, they will get back to those who submitted the stories to make sure they are still interested in sharing them.  Discovery Health TV is NORD’s media partner for Rare Disease Day. For examples of individual's rare disease stories, see the NORD Web site and NORD's Rare Disease Day Web site.

 
         
[Feb 15, 2010 mem]