Wednesday, February 29, 2012

Today is Rare Disease Day

The National Organization for Rare Disorders (NORD) is celebrating Rare Disease Day today.  To help promote increased awareness, I am asking for your help.  It will take less than five minutes, but your involvement could make a difference.

NORD has an electronic messaging service on their website (link is shown below) that allows you to email the president and other elected officials of your choice to tell them you care and why they should also care about rare diseases such as Kennedy’s Disease.  The first portion of the email is ‘canned’, but there is a section near the bottom that allows you to personalize your message (for example, why it is important to you and your family).

NORD’s message to all of us is shown below:

“Tell President Obama, Members of Congress and other elected officials that you care about rare diseases. Follow this link and submit your letter now. Then post the link on  your Facebook, Twitter, blog, website etc. and encourage your friends and family to submit their letters, too.”

Please, take a couple of minutes and let our elected officials know you care.  Thank you.

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