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 [...]
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. [...]
Make Rare Disease a Top USA Health Care Priority, Vote Today at Change.org – 25 Million+, It is time to care about rare disease.
For the millions and millions of kids and adults, brothers and sisters, moms and dads, families of every sort, friends, doctors, researchers, non-profits, foundations, research institutions, hospitals and advocacy groups, for everyone touched by rare disease, put on your blue jeans, put on your blue jeans denim ribbon, and vote for rare disease at Change.org [...]
CureDuchenne Hopes FDA Will Accomodate New Class Of Muscular Dystrophy Drugs Upon Proof Of Safety
Seven years ago, we were a happy family with mom, dad and a beautiful 5 year old boy named Hawken. We had noticed our son was unable to keep up in his first soccer team but we were assured by his pediatrician he was just a “late bloomer.” After insisting on some testing, we got [...]
Re-Thinking Drug Development – NIH Announces New Institute and Pledges Millions To Develop Therapies for Rare Diseases
With the cost of bringing a new drug to market now exceeding $1 billion dollars and taking up to 15 years to test and develop, global pharmaceutical companies are focused on return on investment or making a profit. Of 6,800 rare diseases only 200 have effective pharmacologic treatments, according to NIH. Where does that leave [...]