Tag Archives: United States

2013 RARE Champion of Hope Community Nominated Awards

The Tribute to Champions of Hope Gala is being held in Newport Beach, CA on September 21st and the Global Genes Project is looking for RARE Champions to be recognized for four special awards nominated by you! Nominations are being accepted April 1st through May 15th. Continue reading

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What Are You Doing for Rare Disease Day

What are you doing for Rare disease Day? Continue reading

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Why Making Healthy Lifestyle Choices Can Help Reduce Hearing Loss

Hearing loss sometimes may seem inevitable, especially as we age. For example, according to the National Institute on Deafness and Other Communication Disorders, about 17 million adults in the United States report some form of hearing loss and almost 50 percent of adults ages 75 or older have hearing loss. Continue reading

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Presidential Proclamation for CMT Awareness Month; We Need Your Help!

Presidential Proclamation for CMT Awareness Month; We Need Your Help!

This is one of the greatest privileges we have as U.S. citizens.
We can reach out to our congressperson and ask them to co-sign the
Dear Colleague Letter. Continue reading

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Take Action For Rare Disease Day!

This will only take a few minutes to get your voice heard! Today, February 29, 2012, is Rare Disease Day.  I just took action to raise awareness in the United States about people with rare diseases! Please take a few … Continue reading

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RARE DISEASE DAY IS FEBRUARY 29, 2012

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. Continue reading

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Support the Achieving a Better Life Experience ( ABLE) Act

There’s Still Time to Support the 
ABLE Act of 2011 (H.R. 3423/S. 1872)

 Ring in the new year by telling your elected officials that the ABLE Act matters to you!

Please contact your elected officials, and let them know that you support the Achieving a Better Life Experience (ABLE) Act of 2011, which helps Americans with disabilities save money for the future to achieve more independence and success. Continue reading

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Rare Disease Day February 29, 2012

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases, such as CMT, as a global health challenge. The day is celebrated on the last day of February every year and this year will be … Continue reading

Posted in Charcot-Marie-Tooth disease, neuromuscular disease, peripheral neuropathy | Tagged , , , , , , , | 1 Comment

Am I physically challenged, incapacitated, disabled or just broken?

When a representative of the Charcot-Marie-Tooth Association visited our support group, he said, “Whenever I speak to CMT groups, I ask how many think of themselves as disabled.” He finds very few raise their hand. He went on to say, … Continue reading

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