I met another 1-in-10 today!

February 29, 2012 – Sitting in a business meeting, I casually mentioned that it was Rare Disease Day and a woman raised her hand proudly and said, “I have a rare disease!” I shouldn’t have been surprised, but I was.

Having an orphan disease like MdDS, we so often feel isolated, and it seems like there’s no one out there that understands. But MdDS is just one of more than 7,000 rare diseases that, collectively, affect 1-in-10 Americans.

Whether sitting together over a cup of coffee or chatting on FaceBook, taking action on Rare Disease Day removes that isolation and unites us in solidarity. Don’t fret if you weren’t able to get a Governor’s Proclamation. It took me two years to get one. Just remember, “Alone We Are Rare, Together We Are Strong.”

Here are this year’s Visions of Solidarity.

To learn more about Rare Disease Day and current National Organization for Rare Diseases initiatives, please visit the NORD web site.


Discussion Policy
  1. The strength of numbers not only draws attention to the issues of rare diseases, but, also brings together those affected by a given rare disease. The resulting ‘group’ support provided by those who understand is immeasurable.

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