RARE DISEASE DAY IS FEBRUARY 29, 2012

Rare Disease Day logoRare 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 Handicon during February, and Lundbeck will make a donation to a general fund managed by NORD that is used to support rare disease research.

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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

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About cmtny

Due to symptoms of Charcot-Marie-Tooth (CMT) neuromuscular disorder, I left my career as a pharmacist. Then, with the support of the CMTA, founded the Upstate NY CMT support and action group. I write to raise awareness of this genetic peripheral neuropathy. In addition to writing and advocating for others with CMT, I also co-coordinate our Art de Cure gallery at CPO, where we have raised over $21,000 for CMT research so far.
This entry was posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy and tagged , , , , , , . Bookmark the permalink.

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