Legislative Advocates Conference Call: PDUFA Update
Please join us for a Conference Call on Wednesday, March 28, 2012 at 1:00 p.m. Eastern Draft Agenda: Update the Prescription Drug User Fee Act (PDUFA) reauthorization process Accelerated Approval Language: ULTRA/FAST/TREAT Acts – EveryLife Foundation EXPERRT Act - Cystic Fibrosis Foundation - invited Expediting New Treatments to Patients: FDA Approval Mechanisms - Friends of Cancer Research – invited Accelerated Approval Challenges [...]
CALL TO ACTION !!
Rare Disease Language included in House draft PDUFA Bill RARE Project would like you to consider taking action in support of the new language (FAST Act) related to the Prescription Drug User Fee Act (PDUFA) in the following ways; The more support there is for the FAST Act, the better positioned the rare [...]
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 [...]
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 [...]
EveryLife Art Contest – Today is the Day!
Still interested in the EveryLife Art Contest? Today is the final day for submissions! Submit your art by 5 pm PT Just upload a photo of your art on RareArtist.org and you could win a Visa Gift Card and an iPod Touch! We accept art in the following forms: Painting Photography Mixed Media Collages Pottery Sculptures [...]
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 [...]
EVERYLIFE Art Contest – Extended Deadline for Children & Teens
Submit art by Tuesday, February 7, 2012 at 5 pm PT To encourage more children (ages 5-11) and teens (ages 12-17) to enter the contest, we have extended the entry deadline by 1 week.Easy to enter! Just upload a photo of your art on RareArtist.org and you could win a Visa Gift Card and an iPod Touch! We [...]
Submit your art & win an iPod Touch!
Calling all artists, kids, parents, friends & family! Share your art that captures the beauty, power, love, pain and courage of the rare disease community. Words from a past winner, we couldn’t have said it better: “ This is so much more than just a simple contest to me; this is about being a part [...]