Tag Archives: Marshall Summar

Join NORD in Supporting Rare Disease Day!

Guest blog post by the National Organization for Rare Disorders.

NORD_Logo_2012February 28 is Rare Disease Day – a time to show support for the 30 million Americans, and millions more around the world, living with rare diseases.

Only a few hundred of the nearly 7,000 rare diseases have approved therapies. Many are not being studied at all by medical researchers.

Often, patients – or parents of patients – feel that nothing will be done unless they raise the money, recruit the researchers and fuel the search for their own lifesaving treatment. They find themselves in a race against time, since rare diseases tend to be serious and many are life-threatening.

To promote awareness of these and other rare disease challenges, the National Organization for Rare Disorders (NORD) hosts a national website where all patient advocates can find ways to show their support for Rare Disease Day.  Continue reading →

Advertisements