|CADASIL TOGETHER WE HAVE HOPE |
UPDATE ON RARE DISEASE DAY
THIS WEDNESDAY - FEBRUARY 29, 2012
ACTITIVIES FROM ALL AROUND THE WORLD!
Mark your calendar from Midnight February 28 to midnight February 29 during a 24 hours peirod - Raise Awareness for CADASIL - Tell your Friends and Families
Join National Organization of Rare Disease campaign: From a computer send a message to President Obama and your members of Congress. Others across the U.S. will be doing the same and everyone will be able to access a page on the NORD website where there will be a letter articulating support For Rare Disease Day and its key messages: that rare diseases are an important public health concern; Greater awareness and understanding of the challenges are needed; Far too many patients still have no treatment or cure. Under the general letter, there will be a box where anyone wishing to do so may personalize the leter with the information about CADASIL.
Thank you to Barbara H and Anne B who will be representing CADASIL by going to Washington DC for Rare Disease Day conferences, etc.
How you can help!
Consider on this special day writing a paragraph to help others cope with CADASIL. You do not need to include your name unless you wish to. e-mail us at firstname.lastname@example.org
Youtube video on "We Have CADASIL" Created for Rare Disease Day.
Thank you to Janet M and everyone who sent photos to her. http://www.youtube.com/watch?v=WFRb8xb6eGU
CADASIL Rare Disease Video
|March 01, 2012, the Food and Drug Administration
will celebrate the fifth annual Rare Disease Day by hosting a "FDA Rare Disease Patient Advocacy Day" to engage and educate the rare disease community on regulatory processes related to rare diseases. This meeting is intended to enhance the awareness of the rare disease community as to FDA's roles and responsibilities in the development of products (drugs, biological products and devices) for the diagnosis, prevention, and/or treatment of rare diseases or conditions. 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 interactive meeting will include two general panel discussion sessions, as well as afternoon breakout sessions for more in-depth information on the roles of FDA. In addition, on-site attendees will have an opportunity during lunch to engage with FDA and outside experts in a small group setting.
EURORDIS Hosting Symposium, "Rare Diseases, A Model of EU Solidarity" in Brussels
Austin, Texas - McNeil High School Students celebrating Rare Disease Day in Health Sciences Classes. Each student is creating a brochure on a rare disease and presenting this to their class piers. A bulletin board has been prepared displaying the rare disesae day international logo where students will be displaying their work.
High School Students Participating in Disease Rare Awareness Day