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Dec. 20, 2016

TOPIC: Featured News, Get Involved

A Message from Our President and CEO

Posted by Christina Jensen

“When you are faced with a difficult health challenge, you need to be able to turn to a trusted source for support and advice – much like many people battling rare diseases have turned to NORD in the past 33 years.

NORD will keep fighting to eradicate the challenges for all 7,000 rare diseases . The contributions of our supporters are vital to these efforts and we want to share just how much your help has had an impact on those who are living with rare diseases.

Your contributions help our policy team develop strong federal and state advocacy programs. We celebrate 21st Century Cures being signed into law by the President last week – the result of two years of hard work by NORD and our member organizations and advocates – which affirms the need to keep advocating on behalf of patients.

Your support helps our research team build natural history studies that can provide new data and identify trends across diseases to inform the development of new treatments. This year, we grew our natural history study platform to 26 studies and awarded $340,000 in grants.

Your support also helps educate patients, caregivers, clinicians, and students. In 2016, 6.5 million people from all 50 states and 236 countries came to our website looking for updated and often hard-to-find information, and our call center alone fielded 24,000 calls.  The demand for these services remains high.

Because of the support from individuals like you, NORD’s membership team has been able to build even stronger patient communities.  Since January, we have welcomed 38 new patient groups, bringing our membership total to more than 250 organizations, for whom we develop resources and programs to support their work.

And with the help of people like you, we were able to relieve some of the burden caused by rare diseases and directly assist more than 7,000 people in paying for their medical care.

In this season of giving, we hope that you will think of NORD and consider donating today. Each gift creates a future in which the 1 in 10 Americans with rare diseases have more hope in receiving treatment and cures.

With wishes for a peaceful holiday,”

Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)

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