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 [...]
RARE Disease Lobby Day – February 28 Washington, DC
RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease Week! Join us and make sure Congress hears your voice! Lobby Training Breakfast 7:30a.m. – 9:30a.m. Darlington House 1610 20th ST NW Washington [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET THE SPOONER FAMILY!’ Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising three beautiful children. Despite achieving success in operating their loan company, the Spooners have faced greater challenges and discovered even greater meaning in their lives through the caring [...]
RARE DISEASE LOBBY DAY – ADVOCATES WELCOME
Are you an advocate for Rare Disease? Are you interested in furthering the development of treatment options for Rare Disease? Are you wanting to attend but just not sure how to get there? JOIN US AND MAKE SURE CONGRESS HEARS YOUR VOICE! RDLA has $500 travel scholarships available to advocates who wish to attend and [...]
RARE Disease Events
Don’t miss these other great Rare Disease Day events in DC! Monday, February 27, 2012 RDLA Luncheon Meeting & Conference Call 12:30 – 2:00p.m. at 750 9th Street NW, Suite 750 Washington, DC 2nd Annual RDLA Cocktail Reception and Movie Screening 5:30p.m – 9:00p.m at the West End Cinema, 2301 M Street NW, Washington DC Featuring: The [...]
RARE Disease Lobby Day
WHEN: February 28, 2012 WHERE: Washington, DC WHO: RDLA RDLA (Rare Disease Legislative Advocates) is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease [...]
Managed Named or Compassionate Access to Drugs Still in Clinical Trial
I am participating in an interview tomorrow on early access to drugs that are in Clinical Trial under Managed/Named/Compassionate Access programs (it appears the names are different but the programs are similar). If you have experiences you wish to share about acces during Phase III Trials I would be interested in learning about them – [...]
Sempra Energy and Kids Helping Kids Volunteers Supporting Global Genes Project
Sempra Energy Foundation and Southern California rare disease advocates work to raise awareness and volunteer for the Global Genes Project, a RARE Project initiative. Family and friends gathered together to help make denim ribbons in support of the Global Genes Project’s efforts to support those children and families affected by rare disease. ”It has been [...]