Letters of Support

In 2012, World Rare Disease Day falls on a truly RARE day, February 29. The Global Genes Project will be working with local businesses schools, sports teams, places of worship, parent advocates, etc. to join in the ‘Wear that you Care’ campaign of support. The jean ribbon has become a unifying symbol for hope in the RARE disease community and building awareness is easy! Wear Jeans, Help bring Kids Hope. Log on to www.globalgenesproject.org or more information on how you can get involved to build awareness for RARE disease and The Many Faces of Moebius Syndrome. It’s easy and fun to make a difference for this community in need! Our goal is to have One Million supporters pledge to wear jeans on February 29 2012.

The R.A.R.E. Project team members are currently building the tools for a much needed program called ‘RARE Meet Up’s’. We are currently looking for rare disease advocates to contact us if they are interested in participating in a ‘RARE Meet Up’ group in their local area. The diseases may bedifferent, but the challenges and struggles are the same. For more information log on to www.rareproject.org
The 7,000 Bracelets for Hope, campaign is still going strong! We will continue through 2012 with the
goal of connectin 7,000 RARE families with 7,000 new champions for the cause. For more information please visit our website at www.globalgenesproject.org
The R.A.R.E. And Global Genes Project team members wish The Many Faces of Moebius Syndrome much success on your awareness day on January 24, 2012! We look forward to joining your efforts on this day and on February 29 2012 to build awareness, educate, and unite!
-Amy Grover-
Dir, Community Development
R.A.R.E. Project

Each year, on the last day of February (Feb. 29 in leap years and Feb. 28 in other years) the world celebrates Rare Disease Day, to promote awareness of rare diseases as a public health challenge that cannot be ignored. Rare Disease Day 2011 touched minds, hearts and souls across the nation and 2012 that momentum continues. Advocacy days, like Rare Disease and the Moebius Syndrome Awareness Day, are key components to spreading messages of awareness, advocacy, and hope both within the community and to the public.

The National Organization for Rare Disorders (NORD) is the US sponsor of Rare Disease Day. NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Since 1983, NORD has worked closely with our patient organization members,which now number over 160.

Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. Now, the concept is rippling out around the world; in 2011 46 countries participated. The growth in just a few short years has been remarkable. Last year, the U.S. Senate adopted by unanimous consent a resolution designating February 28, 2011, Rare Disease Day across the U.S. Thanks to an amazing grassroots campaign, proclamations were obtained in 48 states and similar documents were obtained in the two other states.

Other successes this past year were obtaining more than 860 partners and ambassadors who represent patients and their families, patient organizations, government entities, medical or other professional societies, or companies that support the theme of the day. These individuals and organizations contributed to a media and social media blitz where stories, pictures, and videos were shared. Rare Disease Day was also an opportunity to promote the Rare Disease Congressional Caucus that will help focus attention on rare diseases and related needs, such as research. Most iImportantly, however, it was an opportunity to raise awareness about rare diseases. Every story that was shared, press release posted, or pin worn was an opportunity to raise awareness and teach others.

In 2012, we anticipate even more opportunities to spread the message about Rare Diseases. We will rely on the mobilizing capacity of our advocates and networks across the country as we truly cannot do it alone. NORD wishes The Many Faces of Moebius Syndrome and it’s partners the best of luck on your awareness day; all of us together have an opportunity to unite our voices for the common themes of awareness, education, research, and hope!
To learn more about the US initiatives supported through rare disease visit
www.rarediseaseday.us or the global initiatives at www.rarediseaseday.org

.-Tai Spargo- MPA

Special Projects Coordinator