Topic: Rare Disease Day and Rare Disease Patient Advocacy Day

On behalf of The Cholangiocarcinoma Foundation I will take part in various events and have been invited to meet leaders of Rare Disease Patient Organizations

On February 29, 2012, the National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; the National Organization for Rare Disorders; and the Genetic Alliance

We have been granted a poster and exhibit opportunity including the distribution of our brochures and CCF wristband. 
The various scheduled talks will include the opening remarks by Francis Collins, M.D., Ph.D., Director of the National Institute of Health. 

Other items on the agenda include:

Hypothesis-Generating Modes of Research Using Next-Generation Sequencing"

Stem Cells and Regenerative Medicine”

Uncovering the Molecular Basis of Rare Diseases”

FDAs Role in Rare Disease Research and Collaboration on the Path to Product
Development"

Following, on March 1st, the FDA is hosting its first-ever Rare Disease Patient Advocacy Day .  It is planned to engage and educate the rare disease community on regulatory processes related to rare diseases. This educational meeting will consist of live and interactive simultaneous webcast of presentations provided by FDA experts from various Centers and Offices, as well as from outside experts. The FDA Rare Disease Patient Advocacy Day is also supported by the NIH, NORD, and the Genetic Alliance.

I am expecting a busy and eventful trip to Washington, DC.
and hope to have much informative information to share with you.
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Rare Disease Day and Rare Disease Patient Advocacy Day

Marion, what would we all do without you? Safe travels. Love you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Rare Disease Day and Rare Disease Patient Advocacy Day

Hi Marion,

Thanks for this and for everything that you do for us all, your work anbd efforts are so much appreciated by everyone. It does sound like you will have a busy and eventful trip indeed. And of course I wish you a safe trip as well. Looking forward to hearing your report on everything when you return.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.