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World Rare Disease Day

World Rare Disease Day
Monday, February 28, 2011

Genes for Jeans


Special challenges face those with a rare disease, such as Niemann-Pick 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. Groups around the globe are strategizing their advocacy and awareness efforts in support of World Rare Disease Day 2011, to be observed Monday, February 28.

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.  The NNPDF is a Rare Disease Day Partner with NORD, and we support the observance of World Rare Disease Day among our members.

Goals for Rare Disease Day include:

  • Extensive media coverage
  • Social networking blitz
  • Sharing patient stories, videos, photos, and blogs
  • 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.

Share your rare disease experience with others.  Post links to the CCNNPDF site and the NORD site on your Facebook page to raise awareness of the plight of those affected by rare diseases.

Distribute PERSEVERE wristbands to your family and friends to wear in a sign of solidarity in the battle against Niemann-Pick Disease and all rare diseases. Order form

2011 World Rare Disease Day Theme:

"Rare but Equal"
Rare Diseases and Health Inequalities

Show Your Strength, Share Your Story Video Project -- This year NORD invites patients and family members to help create a video dictionary of rare diseases. The goal of the project is to educate the public through the stories of real people. Alnylam Pharmaceuticals has agreed to donate $10 for every video posted to help support NORD's educational programs. Visit http://rarediseaseday.us/ for more details.


Denim & Genes

One easy (and fun) 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 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."

Contact the NNPDF if you would like brochures about Niemann-Pick Disease to distribute to friends, family and co-workers to explain why you are wearing jeans in support of Rare Disease Day.

Visit the Denim & Genes page and NORD's Rare Disease Day site for more ideas about organizing an event to raise awareness and funds.

[Feb 11, 2011 mem]