home      About the CSRF CSRF Mission CSRF Board of Directors Medical Advisory Board Conference Reports Public Awareness In the media You can help! News and Events Our Sponsors Memberships and Donations About Cushing's The Basics Fact Sheet Testing Glossary Adrenal cancer Pedriatic Cushing's Current Research Other Resources Cushing's Doctors Endocrinologists Neurosurgeons International Laporscopic Adrenal Surgeons For Medical Professionals Coping with Cushing's Doctor's Articles Doctor's Answers Articles on Coping with Cushings Helpful Hints by Cushing’s Patients Patient Stories Patients to Contact Member Services Become A Member Main Area Update Your Profile Email Other members Quick Links I think I have Cushing's Make a donation Join our mailing list   Global Rare Disease Day Set for Feb. 28th comment | email | print The CSRF will participate in a global Rare Disease Day on February 28th, 2009. As a Rare Disease Day Partner, we will join hundreds of other patient organizations, government agencies, medical societies and companies in focusing attention on rare diseases on that day. This will be the Second Annual Rare Disease Day. The first was observed in Europe last year and was organized by EURORDIS, the European Rare Disease Organization, and the national alliances of rare disease patient organizations in each country. This year, EURORDIS invited NORD, the National Organization for Rare Disorders, to organize a similar observance in the United States. Activities are also being planned in some other countries. The ultimate goal is to have a global Rare Disease Day on the last day of February each year. The theme is that rare diseases are a public health issue, affecting millions of people around the world. The hope is that Rare Disease Day will increase awareness of rare diseases, the special challenges encountered by those affected, and the need for research to develop safe, effective treatments or cures. As a Rare Disease Day Partner, our organization has agreed to help publicize and promote Rare Disease Day. Partners are invited to post the Rare Disease Day logo on their websites. Also, Partners and their members are encouraged to work with their media contacts, post videos and messages online, share human interest patient stories, and nominate researchers to a Rare Disease Hall of Fame. Pins and bracelets with the Rare Disease Day logo will be available soon at cost to the members of Partner organizations. In addition, all Partners and their members have been invited to write to their state governors to request that Feb. 28, 2009, be designated Rare Disease Day in the state. (A sample letter and resolution are posted on the NORD Rare Disease Day web page.) Watch our website, or the following sites, for more information on these and other activities: U.S. Rare Disease Day page on the NORD website: www.rarediseases.org/rare_disease_day/rare_disease_day_info Global Rare Disease Day website: www.rarediseaseday.org

© copyright 2012, CSRF - 65 E India Row, Suite 22B - Boston, MA 02110 | contact us | site map