On February 29, 2012 millions of people around the world will observe Rare Disease Day for the 5th year. This is the 4th year that the United States will join in.
The Remi Savioz Glut1 Foundation has joined forces with NORD, EURODIS and "The Global Genes Project" and the "Wear That You Care Campaign" and the "Walk A Million Miles For Rare Disease Campaign" that will all take place on February 29, 2012.
Rare Diseases affect over 250 million people worldwide, 30 million people in the US alone, with 75% affecting children. There are over 7,000 rare diseases that have been identified, all with very unique needs, but many with little to no support. Glucose Transporter Type1 Deficiency Syndrome otherwise referred to as Glut1 DS, is one of the 7,000 rare diseases.
In order to make a significant impact and "Make A Difference" in the rare disease community and those affected by Glut1 DS and other disorders affected by Glucose Transporters such as diabetes, cancers and epilepsy, the Remi Savioz Glut1 Foundation needs your help to have these diseases be recognized as a part of a community of millions, impacted by disease.
Rare disease is not so rare, and the community is much more likely to garner the support, attention, and resources it needs if it is viewed as one. It is estimated that 80% of rare diseases are caused by gene defects, and according to the Kakkis EveryLife Foundation, 95% of rare diseases do not have any FDA approved drug treatments.
Since the Orphan Drug Act was enacted 28 years ago in January 1983, only 352 new drugs have been approved by the FDA for all rare diseases combined despite incentives by the federal government.
The Global Genes Project exists to unify, support, build awareness and raise much needed funds for those affected by rare disease. The Global Genes Project campaign broadly promotes the needs of the rare disease community as a whole, engaging the general public, garnering corporate support under the unifying symbol of hope: the blue denim ribbon. The Remi Savioz Glut1 Foundation, together with The Global Genes Project, will wear a blue denim and tie-dyed ribbon to promote National Rare Disease Awareness Day.
The Remi Savioz Glut1 Foundation is proud to partner with NORD, EURODIS and over 350 patient organizations, professional medical societies, and industry and with Global Genes Project, along with over 150 corporate, non-profit, research and professional organizations and universities, hospitals, rare disease organizations, government and policy organizations, media and educational sources and sponsors for the "Wear That You Care" Denim Awareness Campaign for Rare Disease Day.
"Make A Difference" by joining us! Create an awareness and spread the word. It's as easy as wearing our ribbon, a tie-dyed piece of clothing, along with a pair of jeans on February 29, 2012.
"Walk A Million Miles" and support those that suffer from Rare Disease. Donate $1.00 for each mile you walk and together we will "Make A Difference!" Join us and be part of our community today!
(We would love to receive any pictures you have taken of yourself or others participating in the "Wear That You Care" or "Walking A Million Miles" campaign. Gather up a group of people and get involved as a community. Just email them to info@remisglut1foundation.com and we will post them to our Face book page in honor of Rare Disease Awareness Day.)
Together, we can enrich each others lives and the lives of millions who suffer from Rare Disease.
- To promote the Global Genes Project and your Wear Jeans Day campaign locally, and to receive a customized Global Genes Project poster featuring your individual with Glut1 DS or other disease affected by Glucose Transporters such as diabetes, cancer or epilepsy, send an email to info@remisglut1foundation.com with your information. Please be sure to include your name, your individual's name and a photograph in either JPEG or GIF format.
- 100% of the funds raised through your local campaign and event will benefit the Remi Savioz Glut1 Foundations research and awareness initiatives. (A volunteer non-profit charity 501(C)(3).
