The National Organization for Rare Disorders
, an independent advocacy organisation committed to helping the 1 in 10 Americans with rare diseases, has named Marshall L Summar, MD, as chairman of the board of directors, it was reported yesterday.
More than 30 million Americans have one of 6,000 orphan diseases, according to the National Organization for Rare Disorders
In a recently released press release from the Alliance For A Stronger FDA, this quote caught my eye: "FDA's employees do a remarkable job to protect the public health, despite the significant lack of resources," added Diane Dorman, an Alliance board member and Vice President of the National Organization for Rare Disorders
National Organization for Rare Disorders
is a federation of more than 140 voluntary health organizations serving those with rare disorders: www.
org; 866-316-7263) or from the National Organization for Rare Disorders
For more information on this unusual disorder, interested readers are encouraged to contact the Cyclic Vomiting Syndrome Association or the National Organization for Rare Disorders
The "Top 10" list of national health information Web sites include Centers for Disease Control and Prevention, Hardin Medical Directory of Internet Health Sources, Healthfinder, Medem, MedHelp, MedlinePlus, MedWeb, National Organization for Rare Disorders
, NOAH, and Mayo Clinic.
Just ask Abbey Meyers, president of the National Organization for Rare Disorders
, an advocacy group for patients with diseases that affect few people, what Big Pharma ought to do, and she has one answer: "Lower your prices.
Now MUMS receives referrals from all the state's major hospitals as well as national organizations such as the Alliance of Genetic Support Groups, National Organization for Rare Disorders
, March of Dimes in New York, National Information Center for Children & Youth with Handicaps in Washington, DC as well as Parent-to-Parent groups in Georgia, Virginia, Oklahoma, New Mexico, Idaho, Florida, and New York.
The initiative drew praise from some, including Abbey Meyers, president of the National Organization for Rare Disorders
and a former National Institutes of Health gene therapy adviser.
Infants with the genetic defect "lie on the floor, unable to move," says Abbey Meyers, director of the National Organization for Rare Disorders