MassBio Honored with NORD’s Power of Partnership Award

May 8, 2012

Award recognizes collaboration, commitment to the rare disease patient community

May 8, 2012 (CAMBRIDGE, MA) – The Massachusetts Biotechnology Council (MassBio) and Blair Van Brunt of the Shwachman-Diamond Syndrome Foundation will receive the 2012 Power of Partnership Award from the National Organization of Rare Disorders (NORD).

The award, which recognizes the success of Massachusetts’ Rare Disease Day Celebration at the State House, will be presented at the Partners in Progress Celebration on Tuesday, May 15 in Washington, DC. The Power of Partnership Award honors individuals and/or organizations for initiatives undertaken voluntarily on behalf of the rare disease patient community.

Organized by MassBio and Van Brunt, Rare Disease Day at the Massachusetts State House on February 29th, 2012, brought together more than a hundred patient advocates, biotechnology industry stakeholders and legislators to raise awareness of issues associated with rare diseases, which affect nearly 30 million Americans.

“We are honored to be recognized by NORD for our efforts on Rare Disease Day and with the patient community,” said Robert K. Coughlin, President and CEO of MassBio. “We are proud to be a partner in worldwide efforts to call attention to rare diseases, and to the importance of supporting investment in early stage research to solve the special challenges facing patients with rare diseases and their families every day.”

Van Brunt, President of the Shwachman-Diamond Syndrome Foundation and the parent of a child with that rare disease explained, “Creating awareness and hopefully better treatments, legislation and products for this community helps us realize that helping one, helps all.”

"This is NORD's opportunity to celebrate excellence and to say thank you on behalf of the patient community to those who have advanced the cause during the previous year," said Peter L. Saltonstall, NORD president and CEO.   "We look forward to this event each year, and we truly appreciate the accomplishments it honors."

The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

 

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