The National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to theidentification, treatment, and cure of rare disorders and official U.S. sponsor of Rare Disease Day® on February 28, announces a new social media campaign, #1in10, to raise awareness for the 1 in 10 Americans living with a rare disease.
“It’s astounding that there are just as many Americans living with a rare disease as there are people who are left-handed,” said Lisa Phelps, director of marketing and community relations at NORD. “We are launching this campaign for everyone who has a rare disease, their families, caregivers, nurses and doctors to help raise important awareness for this major public health issue and the need for safe, new treatments.”
Today,Peter L. Saltonstall, President and CEO of NORD, issued a statement following the announcement by FDA Commissioner Margaret Hamburg, MD, that she will leave her job at the end of March:
Dr. Hamburg has been an ardent and sincere supporter of the rare disease community and orphan drug issues since becoming FDA Commissioner six years ago. She has spoken at a number of our meetings, most recently as keynoter at our Summit last October. I recall in particular her participation several years ago in one of our patient forums when she demonstrated compassion and understanding for the special challenges faced by patients with rare diseases.
Her tenure at FDA has been positive for the rare disease community. We at NORD have worked more closely with FDA than ever before on issues of mutual interest.
I wish Dr. Hamburg well as she pursues new interests and look forward to continuing our productive relationship with the FDA leadership.
Yesterday, the House Energy and Commerce Committee released its much-anticipated discussion draft for its 21st Century Cures initiative. NORD President and CEO, Peter L. Saltonstall, issued the following statement in response.
The discussion paper issued by the House Energy and Commerce Committee on January 27 contains a number of ideas on how to advance the development of new medical therapies. A few provisions apply specifically to rare diseases, including adding six months to the patent life of orphan drugs. The Committee and its staff deserve praise for its effort in bringing these ideas together. NORD was pleased to have submitted a number of position papers for the Committee to consider.
NORD’s Advocacy Committee will now conduct an evaluation of the discussion paper. Once that process is completed, we will share our position with the Committee. We will continue to work closely with the Committee and members of the House and Senate as legislation moves forward.
Nothing is more important to the rare disease community than providing an environment conducive to the development of new therapies and access to them. We look forward to working with other like-minded advocates on these issues.
Soft drink and fast food companies often make children the primary targets of their advertising. These companies know that people frequently establish consumption habits at an impressionable young age that extend well into adulthood. Such a long-term strategy isn’t just smart business. It is essential to the survival of the brand.
As a second-year medical student with two younger brothers who have a rare genetic disease – ataxia telangiectasia – I think the rare disease community can learn and benefit from the strategies of these corporations. read more >
The cost of orphan drugs, and whether it is approaching a level where sustainability may be an issue, is a topic of intense interest in the rare disease community. However, an important new study reported at the recent American Society of Hematology meeting suggests that the overall budget impact of orphan drugs may be smaller than many people would assume. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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