The Grassroots Movement Behind Ultra and Fast: Join the Movement!
A Guest Blog by Julia Jenkins: Director of Government Relations, EveryLife Foundation The Grassroots Movement Behind ULTRA-FAST & How you can join the Movement! We are very excited to share the news that rare disease Accelerated Approval language made it into the House draft PDUFA bill. The language that incorporates the goals of [...]
February 29 – A Celebration of Unity
The Month of February During the month of February, much of the American population will be celebrating historical events, special interest groups and campaigns. Some of these include Black History, American History, Children’s Dental Health, and American Heart Month. Internationally recognized events in February include National Embroidery month (my favorite), Wild Bird Feeding, Cherry and [...]
RARE DISEASE DAY EVENTS
Looking for a way to participate in Rare Disease Day Events? Don’t miss these Rare Disease Day events in DC! Monday, February 27, 2012 RDLA Luncheon Meeting & Conference Call (Host: Rare Disease Legislative Advocates) 12:30 – 2:00p.m. at 750 9th Street NW, Suite 750 Washington, DC 2nd Annual RDLA Cocktail Reception and [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET JUNE!’ I am a 43 year old woman with Relapsing Polychondritis. 1 in 3.5 Million people are diagnosed with this disease. My favorite saying is “I couldn’t just win the lottery??” I was diagnosed by my allergist who recognized my swollen ears, a hallmark of this disease. Some day it will probably kill me, [...]
ACTION ALERT – World RARE Disease Day at National Institute of Health
Rare Disease Day at NIH (RDD@NIH) 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; [...]
RARE DISEASES – Washington Post Supplement sheds light and insights into the world of rare disease
Many Advocates, Industry, Parents, Advocacy Organizations have participated in the first in a series of Rare Disease reports being produced by Media Planet. This first report will be seen by over 4 million readers of the Washington Post, available on newstands around the country today. Make sure and pass this along. It’s an important read [...]
6th Annual Rare Disease Leadership Summit – Register to attend TODAY!
On the Forefront of Orphan Drug Development – Re-examining the Orphan Drug Act and Key Initiatives Impacting the Clinical, Regulatory and Reimbursement Landscape July 12-13, 2011,Washington, District of Columbia In 2011, CBI is proud to present its 6th Annual Rare Disease Leadership Summit at a critical time for this community. Advocates of the 5,800 rare [...]
GLOBAL GENES PROJECT – NEWS AND UPDATES
Global Genes Project E-News It’s a Wrap – Rare Disease Day 2011. DANA POINT, Calif. – The 4th Annual World Rare Disease Day took place February 28, 2011 with a fanfare of activities worldwide! Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased attention and engagement than previous years. [...]
More Than 400 Medicines in Development to Treat or Prevent Rare Diseases
A recent report released by PhRMA states that more drugs are currently in development for rare diseases than have been released in over 20 years since the Orphan Drug Act! The Pharmaceutical Research and Manufacturers of America (PhRMA) represents the country’s leading pharmaceutical research and biotechnology companies, which are devoted to inventing medicines that allow [...]
Shire Supports World Rare Disease Day 2011 and Long Term Commitment to Rare Disease
Global Initiatives Underscore Company’s Long-term Commitment to the Rare Disease Community Lexington, Massachusetts, USA 28th February /PRNewswire/ — Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today announced its support of World Rare Disease Day, joining patients, healthcare providers, and patient organizations around the world to support a day that focuses attention [...]