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Capitol Hill & Election Updates

Congress has returned to their states and districts, marking the start of an extended Summer Recess. RDLA's In-District Lobby Days have officially kicked-off, providing advocates the opportunity to meet with their Representatives and Senators in their own states and districts. Please remember to post your photos on the RDLA Facebook page and tag us on Twitter using @rareadvocates. This year, advocates are continuing to focus on the top priorities for the rare disease community, which include 21st Century Cures, the OPEN ACT, and funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Advocates are hopeful that the Senate will take-up these legislative issues once Congress resumes in early September, after Labor Day. 

Last week, the FDA released its draft commitment letter outlining the agreement it has reached with industry regarding review times for drug applications. The letter, formally known as the Prescription Drug User Fee Act (PDUFA VI), contains a wide variety of provisions of interest and relevance to the rare disease community. In particular, the agreement includes portions on enhanced use of biomarkers, increased patient engagement, and improvements in specialization for reviewing rare disease therapies. For more information on the letter and it's rare disease provisions, you may view the release on the EveryLife Foundation's news feed

With the election in full swing, the Presidential candidates are talking about health care. Click here to view an analysis of each candidate's health proposals to see how they compare. Curious as to where your Representative and Senators stand on these issues? Check out Research!America's Campaign for Cures to learn more. 

Community Events

RDLA has launched a new Public Policy Events Calendar! This calendar will be home to all the legislative and policy events listed in monthly E-Blasts. To have your event included, please submit it to Vignesh Ganapathy at vganapathy@everylifefoundation.org. 

On Wednesday July 27th, Parent Project Muscular Dystrophy is holding a Capitol Hill briefing: Duchenne Muscular Dystrophy and 21st Century Cures Legislation. The event will take place from 11am-Noon in the Capitol Visitors Center in room SVC-201. For more information and to RSVP, click here.

The next RDLA webinar will take place on Wednesday, August 10th at 1pm Eastern/10am Pacific. We have a variety of speakers lined-up to provide updates on PDUFA and other pressing legislative issues, so please be sure to register here.

On Monday, August 15th, the FDA will host the final public meeting to discuss the PDUFA letter. The meeting will be held at FDA's White Oak Campus in Silver Spring from 9am-2pm. Registration deadline is August 8th.  For those unable to attend in-person, comments may be submitted online here

On Thursday, September 8th, Research!America will hold its annual National Health Research Forum bringing together stakeholders from across the medical research community. Featured panelists will include Dr. Emil Kakkis (EveryLife Foundation), Commissioner Rob Califf (FDA), Dr. Anthony Fauci (NIH), and Dr. Tom Friedan (Center for Disease Control Director) along with other luminaries. For more information and to register, click here. 

On Wednesday, September 14th, RDLA and the Rare Disease Congressional Caucus will convene a briefing in the Cannon House Caucus room from 12pm-1pm in Washington, D.C. The event will highlight value, innovation, and access for rare disease therapies. To register for the event, click here

On Thursday, September 22nd, Global Genes kicks off its annual Rare Patient Advocacy Summit in Huntington Beach, California. The two day event will feature a wealth of resources for patient advocates and will bring together patients from across the rare disease spectrum. For more information and to register, click here. 

On Thursday, September 22nd, the Rally for Medical Research will take place in Washington, D.C. Advocates from across the nation will convene on Capitol Hill to urge Congress to boost funding for medical research at the NIH. Click here to learn more about the event and to register. 

On Wednesday, October 5th, Amgen is holding its Annual Health Equity Summit at The George Washington University in Washington, D.C. The meeting will highlight ways to incorporate health equity into various advocacy platforms. Email Meg Hanhan (meg.hanhan@rx4good.com) to learn more and to register.

On November 16th, RDLA will host the annual RareVoice Awards Ceremony in Washington, DC. We are seeking nominations for outstanding advocates in the following categories: Congressional Staff, Patient Advocate/Organization for Federal Advocacy, Patient Advocate/Organization for State Advocacy, and Government Agency Staff. The nomination deadline is fast approaching, please submit your nominees by Sunday, July 31stClick here to view the submission form - help us celebrate outstanding advocates! 

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***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.

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