The International Foundation for CDKL5 Research will be participating in the 4th annual observance of Rare Disease Day USA on February 29, 2012. The day has been established as a grassroots advocacy day and everyone is encouraged to participate in some way. This year’s theme is solidarity and the official slogan is “Rare but Strong Together”. The message conveys the idea that people affected by rare disease are not alone and by working together, we can move forward in our goals of awareness and cures.
According to www.rarediseaseday.com, in the U.S., a rare disease is classified as a disease that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983. This definition varies slightly from the definition of a rare disease in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. As many as one in ten Americans are suffering from a rare disease.
Along with dealing with specific medical problems, people with a rare disease struggle to get a proper diagnosis, find information, and get treatment. Because the conditions of the disease are so rare, medical research is underfunded.
The IFCR is excited to be a part of Rare Disease Day 2012 and a member of NORD (National Organization for Rare Disorders). To help draw attention to all rare diseases, the IFCR is inviting everyone to host your own fondue fundraiser on Saturday, February 25, 2012. Everything you need to host your event can be found on this page.
As you are hosting your event, keep in your thoughts all of the beautiful children that are affected by CDKL5 and all rare diseases, and know that you are making a difference!
For more information on Rare Disease Day please visit: http://rarediseaseday.us/. Check out Global Rare Disease Day Activities at www.rarediseaseday.org. To find out more ways you can get involved in fundraising for the IFCR, please visit https://www.cdkl5.com/News-Events.