Spread the word » Facebook Twitter

Capitol Hill Updates

Senate Innovations Legislation
The Senate Health, Education, Labor, and Pensions (HELP) Committee has announced plans to move forward on the biomedical innovation legislation passed by the House last year. Chairman Alexander (R-TN) has indicated that the Committee plans to hold three separate markups to consider individual medical innovation bills. To date, several bills of importance to the rare disease community have been slated for consideration, including the Advancing Targeted Therapies for Rare Diseases Act of 2015, Advancing Neurological Diseases Act of 2015, Advancing Hope Act of 2015 (Priority Review Voucher program), and legislation supporting the Precision Medicine Initiative. Missing from the proposed legislative package were two bipartisan legislative bills: the Patient Focused Impact Assessment Act and the Orphan Product Extensions Now, Accelerating Cures & Treatments (OPEN ACT).
Click here to view the full press release from the Senate HELP Committee

FDA Commissioner-Elect Faces New Challenge
Dr. Robert Califf's nomination for Commissioner of the Food & Drug Administration (FDA)
has hit new roadbumps. Sen. Ed Markey (D-MA) and Sen. Joe Manchin (D-WV) have put holds on the nomination due to concerns over prescription painkillers, while Sen. Lisa Murkowski (R-AK) has done so due to concerns over genetically modified salmon labeling. In addition, Sen. Bernie Sanders (D-VT), who has long pointed out Dr. Califf's ties to industry, has officially filed to hold the nomination as well. At the time of this writing no official confirmation vote has been scheduled. 

Community Action Alerts & Policy Resources

Pennsylvania Advocates: Urge Sen. Casey to Co-Sponsor the OPEN ACT
The OPEN ACT has the potential to double the number of treatments available to rare disease patients. The EveryLife Foundation for Rare Diseases is urging advocates in
Pennsylvania to call Sen. Bob Casey (D-PA) and request that he co-sponsor the OPEN ACT

Sign-On to Preserve GINA Protections
Genetic Alliance is circulating a sign-on letter about the Genetic Information Nondiscrimination Act (GINA). The Equal Employment Opportunity Commission has released a proposed rule on GINA that could severely undermine the protections of the law. Genetic Alliance is seeking organizations to sign-on and offer comments.
Click here for more information and to sign the letter, and click here to submit comments

Community Events

Rare Disease Week on Capitol Hill
Rare Disease Week on Capitol Hill (February 29-March 3rd) is right around the corner! The week includes Rare Disease Day at the NIH, film screening, legislative conference, lobby day, Capitol Hill briefing, and Rare Artist reception, which celebrates artists from the rare disease community.
Click here for the full schedule and to register.

We will be hosting our next Rare Disease Week webinar at 2pm ET/11am PT on Tuesday, February 23rd. Click here to register.

Save the Date: Next RDLA Webinar
The next RDLA webinar will be held at 1pm ET/10am PT on Wednesday, February 17th. As a reminder, all of the RDLA webinars have open agendas, so please send suggested items to

Rare Disease State House Events
On Monday, February 29th, NORD will be hosting State House events in 35 states to provide advocates with an opportunity to meet with their elected officials and engage in state-level advocacy.
Click here to check out the lists of participating states and registration information. 

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

Receive this from a friend?
Sign-up for our email list to make sure you don’t miss monthly newsletters and action alerts!

***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.

Click here to unsubscribe