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
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,