Rare Disease Legislative Advocates-
Help Grow the Rare Disease Congressional Caucus
Help us strengthen the rare disease community’s voice on Capitol Hill! Please take 3 minutes to ask your Member of Congress to join the Rare Disease Caucus at http://bit.ly/RareAlert.
It’s easy – the Action Center has a draft letter …
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Meet the Rare Disease Congressional Caucus
150 Advocates joined RDLA for it’s 2nd Lobby Day in Washington, DC to encourage Members of Congress to join the Rare Disease Caucus. The new list of Members has just been updated!
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Rare Disease Legislative Conference Presentations
RDLA hosted it’s first Legislative Conference in Washington, DC on February 26 during for Rare Disease Day week. Nearly 200 advocates attended to learn about the legislative and political process. The goal of the conference was to give attendees the tools to build relationships with Members of Congress, and work with stakeholders to build coalitions, introduce and pass legislation.
PhRMA Science Seminar: “Advancing Patient-Focused Drug Development and Benefit-Risk Assessment”
You are invited to a PhRMA Science Seminar
Thursday, May 30, 2013 11:00 a.m. – 1:00 p.m. Eastern
PhRMA Boardroom 950 F Street, Suite 300, Washington, D.C.
Webinar/Call in information below
Debate on NPR: Is The FDA’s Caution Hazardous To Our Health?
When it comes to approving new medical treatments, the Food and Drug Administration is balancing the need for patient safety against the urgency of making important new available as quickly as possible.
BRAIN Initiative Top of Mind at Senate Appropriations Hearing
On May 15, National Institutes of Health (NIH) Director, Dr. Francis Collins, appeared before the Senate Labor, Health and Human Services (LHHS) Appropriations Committee to testify in support of the Obama Administration’s FY 2014 funding request for biomedical research.
Take Action
Sign-on to Protect the Orphan Drug Tax Credit
Thursday, May 16, 2013
The Orphan Drug Tax Credit (ODTC) is part of a package of provisions enacted in 1983 in the Orphan Drug Act that provide incentives for drug companies to develop products for rare diseases. Tax reform is planned for this Congress …
Help Grow the Rare Disease Congressional Caucus
Wednesday, May 8, 2013
Help us strengthen the rare disease community’s voice on Capitol Hill! Please take 3 minutes to ask your Member of Congress to join the Rare Disease Caucus at http://bit.ly/RareAlert.
It’s easy – the Action Center has a draft letter …
Rare Disease Patient Sign-on Letter for Essential Health Benefits
Monday, May 6, 2013
Obama Care Implementation: Sign on to Ensure Rare Diseases Patients have access to needed treatments, physicians and specialists in new Health Insurance Exchanges
Deadline to sign on is COB Friday, May 31st.…
Medicare Part B – Ensure Medicare payments for providers of drugs and biologics
Thursday, May 2, 2013
An informal coalition is working with the American Life Sciences Innovation Council (ALSIC) to protect Medicare Part B against cuts, especially for injectables or drugs administered by physicians for cancer, arthritis, rare diseases and other conditions.…
