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NORD Launches Campaign to Educate State Legislators About Living With Rare Diseases

Patient Advocates and Supporters to Host State House Events for Rare Disease Day 2013

Patient Advocates and Supporters to Host State House Events for Rare Disease Day 2013

WASHINGTON DC, Dec. 11, 2012----The National Organization for Rare Disorders (NORD) has launched a nationwide campaign to help leaders of rare disease patient organizations -- and those who support them -- educate their state officials for Rare Disease Day 2013 (Feb. 28, 2013).

The campaign is just one of many activities NORD will oversee as the national sponsor of Rare Disease Day in the U.S.  Rare Disease Day is observed globally each year on the last day of February.

"It's very important for officials at the state level to understand what it's like to live with a rare disease," said NORD President and CEO Peter L. Saltonstall.  "Key decisions affecting the lives of patients and their families on issues such as newborn screening and medical foods are made at the state level.  We want to ensure that those making these decisions have access to good information."

There are nearly 7,000 diseases considered rare in the U.S. affecting approximately 30 million Americans.  NORD will work with patient organizations, medical researchers and clinicians, companies developing treatments for rare diseases, and others to share key messages with legislators in states across the U.S.

The project is modeled on a successful Massachusetts State House event organized by Blair Van Brunt of the Shwachman Diamond Syndrome Foundation and Sarah MacDonald of the Massachusetts Biotechnology Organization.  Van Brunt and MacDonald are working with NORD to develop resources for people interested in organizing similar events in other states.

NORD will publicize the project through the national Rare Disease Day website (www.rarediseaseday.us).  Individuals interested in organizing events may sign up through the website to receive guidance from NORD, as well as help in connecting with others in their state who have also expressed interest.

Van Brunt and MacDonald will participate with NORD in teleconference training sessions for individuals interested in hosting state house events, with the first of these scheduled for this week.  For information about hosting a state house event, go to the RareDiseaseDay.US website.

 
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