FMD Chat Connects With RareConnect


Those affected by fibromuscular dysplasia around the world now have a new option through which to interact with one another as the result of a partnerhship between FMD Chat and RareConnect. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for […]

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 […]

It’s a Wrap – World RARE Disease Day 2012 Success


The 5th Annual World Rare Disease Day took place February 29, 2012, 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. Once again, the Global Genes Project™ […]

February 29, 2012 – 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 […]



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 […]

Relapsing Polychondritis – My Chances of Winning The Lottery Are Better


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 […]

World RARE Disease Day at National Institutes of Health


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 […]