For the sixth year, we’re proudly partnering with the pharmaceutical company Lundbeck on the “Raise Your Hand to Fight Rare Diseases” campaign, which supports rare disease research in celebration of Rare Disease Day.
The campaign invites individuals to visit the Rare Disease Day U.S. website, http://rarediseaseday.us, and click on the “Raise Your Hand” icon during the month of February. Each unique click triggers Lundbeck to make a $1 donation to NORD’s research grant fund (up to a maximum donation of $10,000).
Rare Disease Day is an international awareness day held annually on the last day of February. NORD is proud to be the official U.S. sponsor for this important event. read more >
The bleeding disorders community will be recognizing Rare Disease Day on February 28, Hemophilia Awareness Month during the entire month of March, and World Hemophilia Day of April 17. These important dates were created to raise awareness and education about rare conditions like hemophilia and bleeding disorders.
NORD is thrilled to partner with our member organization, Hemophilia Federation of America, to raise awareness. HFA is offering shirts that say “I Am Rare. I Matter.” to help you raise awareness during these important upcoming community dates! Proceeds will be donated to HFA and NORD.
Don’t miss out, the limited edition shirts (available in grey and red, crew and v-neck) will only be available until Sunday, February 15. Order here: http://www.booster.com/rarediseaseday2015.
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.
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.
Translate This page:
SUBSCRIBE TO OUR E-NEWS