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 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.”
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 >
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 >
Latest grants continue NORD’s 26-year tradition of promoting life sciences research in rare diseases
NORD has announced six new research grants to advance safe, new treatment options for rare disease patients and their families. With the new grants, NORD upholds its time-honored tradition of funding basic and translational research in rare diseases. By providing oversight of ongoing research projects as well as the generation of seed grants for new research projects, NORD is a leader in promoting life sciences research in rare diseases. Throughout its 26-year history, NORD’s research grant program has administered more than 150 grants.
Grants are made possible by allies of the rare diseases community, including those mentioned below, that have generously supported research in rare diseases by donating to a NORD research fund. As the funds mature, NORD issues research requests for research proposals and disseminates information about the opportunity.
Researchers who are interested in applying for funding submit proposals in a competitive process in which they are independently reviewed by NORD’s Medical Advisory Committee. See NORD’s website (https://www.rarediseases.org/medical-professionals/research-grants) for a complete description of policies and procedures for NORD research grants.
Research grants awarded for 2014 requests for proposals include:
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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