Legislative News

PharmaVOICE on 21st Century Cures Act
A recent article in PharmaVOICE provides an update on the 21st Century Cures Act and highlights provisions that are particularly important to the rare disease commuity. Please read and share widely!

Senate Considers Nomination of Dr. Robert Califf for FDA Commissioner
Last month, the Senate Committee on Health, Education, Labor and Education held a hearing to consider the nomination of Dr. Robert Califf for the post of Commissioner of the Food and Drug Administration (FDA). Numerous patient organizations, including the EveryLife Foundation for Rare Diseases, FasterCures, and National Organization for Rare Disorders (NORD), submitted letters in support of his confirmation.  



Action Alerts & Policy Resources

EveryLife Foundation for Rare Diseases: Urge the Senate to Prioritize Innovation for Healthier Americans
In July, the House passed the historic 21st Century Cures Act, legislation that could be a game-changer for rare disease patients. But the companion initiative in the Senate, Innovation for Healthier Americans, has stalled. Click here to contact your senators and urge them to prioritize Innovation for Healthier Americans

Pulmonary Hypertension Association Seeks Organizations to Sign-On 
PHA is seeking organizations to sign onto a letter in support of the Pulmonary Hypertension Research & Diagnosis Act (HR 3520), which could help enable earlier diagnosis of pulmonary hypertension. Click here to read the full letter and to sign. 



RDLA Events

Save the Date: Monthly RDLA Webinar on December 16
The next RDLA monthly webinar will be held on Wednesday, December 16th, at 2pm ET. The full agenda is forthcoming, but interested participants may reserve their spots by registering here. Please plan to join us!


Rare Disease Week on Capitol Hill: February 29 – March 3, 2016
Mark your calendars and join us in Washington D.C. in 2016 for Rare Disease Week on Capitol Hill. The week will kick off with Rare Disease Day at the National Institutes of Health (NIH) on February 29, 2016. This will be followed by a week-long series of events that aim to educate, motivate, and bring the voice of rare disease advocates to the halls of Congress. The EveryLife Foundation is accepting applications for travel scholarships up to $1,000 through December 31st. For a complete schedule of Rare Disease Week on Capitol Hill events, visit the event page.




Capitol Hill Events

BIO & PhRMA to Host Biosimilar Briefing
On Monday, December 7th, please join BIO and PhRMA in Washington, D.C. for a meeting at noon focusing on biologics, biosimilars and the Biosimilar User Fee Act (BsUFA). A biosimilar is a biological product that is approved based on a showing that it is highly similar to an already approved biological product. For the full event details and to RSVP, click here


Join Us on Social Media
Stay up to date on breaking rare disease legislative news by following @RareAdvocates on Twitter and Facebook.


 ***This E-Blast shares action alerts, legislative, and policy news and events from the patient advocacy community. RDLA does not take positions on the issues herein, but serves as a supportive clearinghouse for the rare disease community. Send us an email if you'd like your alerts and/or events included! Email mbronstein@everylifefoundation.org