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.”
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 >
In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD board member, talks about the importance of patient registries for rare diseases, and the role that NORD’s patient registry program has in helping patients and educating doctors. According to Dr. Summar, registries can accelerate the process of treatment and help physicians address the big knowledge gap about what happens in the day-to-day lives of patients. 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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