Dear HDSA Friends

Today, February 28, is Rare Disease Day, an annual observance celebrated around the world to communicate need to find treatments and cures for the tens of millions of people suffering from rare diseases.

In the United States more than 30 million people have a rare disease—66% children. Only a few hundred of the 7000 identified rare diseases have FDA-approved treatments.

Why is Rare Disease Day important to HD families? Because it helps build awareness in the general public of the challenges facing people with rare diseases, and the difficulties in developing therapies for smaller patient groups.

A more educated and sympathetic public can help aid the passage of the HD Parity Act and maintain funding for NIH/NINDS HD research programs, in these budget-cutting times

It will also help organizations like HDSA gain recognition from individuals, foundations and corporations that have previously only supported "common" disease organizations. They will be made aware that many of their neighbors are suffering with disorders that are not being addressed by academic or commercial research organizations.

This year is the 30th Anniversary of the Orphan Drug Act, an historic piece of legislation that was prompted by the work of many patient-advocates who worked to ensure that the U.S. Government recognize the challenges facing people with rare diseases. In these budget-cutting times, it's crucial that we make our voices heard, so that funding to support initiatives such as the NIH focus on translational research and clinical trials is maintained.

How can you help commemorate Rare Disease Day? Sign up to become an HD Advocate (www.hdsa.org/advocacy) or send an email to 5 colleagues or acquaintances about Huntington's disease and HDSA. Ask them to help by attending events, volunteering their services or donating to HDSA's research and care initiatives.

HDSA is a member of NORD -- the National Organization for Rare Disorders, which evolved from the effort to support the Orphan Drug Act.. To find out about other Rare Disease Day activities please visit a special site put up by NORD, www.rarediseaseday.us.

Thanks for everything you do to bring Help for Today, Hope for Tomorrow to everyone affected by HD.

Best regards,
Louise



Edited 1 time(s). Last edit at 02/28/2013 01:50PM by SteveI.