Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 29, 2012. In the U.S., a rare disease is one that affects fewer than 200,000 people. For instance CMT (Charcot-Marie-Tooth disorder effects an estimated 150,000 people in the U.S.
Almost 30 million Americans are affected by one of the nearly 7,000 rare diseases. In addition to dealing with their specific health condition, people with rare diseases struggle to get a proper diagnosis, and to get treatment. In my case, it took 47 years before I was diagnosed with CMT, even though symptoms began in my childhood. Once diagnosed it is difficult to find physicians, or physical therapists, who are familiar with many of the rare diseases. The rarity of these conditions makes medical research more difficult since pharmaceutical companies and grant providers are reluctant to pay for research that may help a somewhat limited amount of people.
However, Lundbeck has launched a campaign to raise funds for rare disease day. Simply click the ‘Raise Your Hand’ icon during February, and Lundbeck will make a donation to a general fund managed by NORD that is used to support rare disease research.
Visit (www.rarediseaseday.us) to find ways to spread the word through social networking sites, including Facebook and Twitter. The site also offers stories from people with rare diseases and additional suggestions regarding how individuals can support the rare disease community.
Resources: http://rarediseaseday.us/raise-your-hand/ http://www.lundbeck.com/us
Related articles
- Rare Disease Day February 29, 2012 (cmtnyus.wordpress.com)
Charcot-Marie-Tooth Association
