Tuesday, April 12, 2016

Dupuytren's Disease, Dupuytren's Contracture and Ledderhose Disease, A RARE DISEASE recognized by NORD

NORD, National Organization for Rare Disease recognizes Dupuytren's and it's affiliated disease as a rare disease. http://rarediseases.org/rare-diseases/dupuytrens-contracture/ While Dupuyren's disease or Ledderhose disease does not always cause contracture, Dupuytren's Contracture is a term used for the hands when they do contract.  NORD has chosen February 28, 2017 as Rare Disease Day( http://rarediseases.org/for-patients-and-families/connect-others/rare-disease-day/ )and on this day we can each share our story on their website and on our personal sites to make others aware of this disease.  Please share your story, our disease is not as rare as you think!  We have millions of people in the USA with this disease and we still do not have anyone in an active stage of testing for a cure.  The Dupuytren Foundation is trying to find 10,000 people to sign up for the Dups Study, but in 6 months they have only found 700.  So, sharing your story will help us get to those millions.  If you have not registered, please do: The Dup's Study link is:  http://dupuytrens.org/enroll-in-the-iddb/

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1 comment:

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