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Capitol Hill Updates

The surprise outcome from the Presidential election has dominated the news cycle, with policy analysts scrambling to determine how a Trump Adminsitration will impact the nation going forward. At the time of this writing, the transition team is focused on national security appointments. Although several names have been floated to lead the Department of Health and Human Services (HHS), we are still awaiting a final pick from the new administration. Once that decision is made, we are likely to know more about appointments for agencies like the NIH and FDA. Protocol requires agency heads to submit a letter of resignation by mid-December, though in some instances, agency heads have stayed on at the request of the President-elect. 

As the new political landcape begins to emerge, it is clear that the Republican-controlled Congress and White House are both looking to repeal or significantly reform the Affordable Care Act (Obamacare). Discussions are now underway concerning what a replacement could look like, but the new Administration has expressed support for some aspects of the existing law, in particular provisions allowing parental health care coverage for those 26 or younger as well as ensuring that patients can obtain coverage regardless of pre-existing conditions. 

In Congress, Speaker Paul Ryan (R-WI) has maintained his post though Leader Nancy Pelosi's (D-CA) role has been challenged by Representative Tim Ryan (D-OH). The House Energy & Commerce Committee, currently led by Chairman Upton (R-MI), will select a new chair in the coming weeks as Upton is term-limited. On the Senate side, Sen. Lamar Alexander (R-TN) will retain his post as chairman of the Health, Educaiton, Labor, and Pensions (HELP) Committee.

The rare disease community has stepped up in a big way to help push 21st Century Cures over the finish line. The EveryLife Foundation partnered with NORD, Global Genes, and hundreds of other patient organizations for a day of action urging Congress to come to an agreement and pass Cures. At the time of this writing, the advocacy campaign has generated thousands of calls to Capitol Hill. Negotiations are ongoing in an attempt to craft a bipartisan bill before time runs out this Congress. 

Community Action Alerts & Policy Resources

The EveryLife Foundation for Rare Diseases is asking advocates to call Senators Murray (D-WA) and Warren (D-MA) to urge them to support the OPEN ACT, legislation that could double the number of therapies available to patients. While the larger package around 21st Century Cures is gaining momentum, some key Democrats are calling for the OPEN ACT to be removed. Please call Sens. Warren and Murray to help save the OPEN ACT!

The National Organization for Rare Disorders (NORD) has released new resources for advocates to prepare for Rare Disease Day on February 28th, 2017. Any questions about the day or the resources can be sent to rdd-us@rarediseases.org. 

Community Events

On Tuesday, November 29th, Cure SMA will hold its Annual Hope on the Hill Congressional Dinner at 5:30pm at the Willard Hotel in Washington, DC. For more information about the event and to register, click here

On Wednesday, November 30th, RDLA will hold the next monthly webinar at 1pm ET. Click here to register. If you are interested in speaking or adding a topic to the agenda, please contact Vignesh Ganapathy vganapathy@everylifefoundation.org

On Tuesday, December 6th, the Regenerative Medicine Foundation will kick off the annual World Stem Cell Summit in West Palm Beach, FL. The event will feature scientific panels and highlight the policy challenges surrounding regenerative medicine and other experimental therapies. For more information and to register, click here. 

On Tuesday, December 7th, the California Life Sciences Association (CLSA) will hold its annual end of year reception from 5:30pm until 8:00pm at the Sonoma Restaurant on Capitol Hill. Click here to register and learn more. 

On Wednesday, December 7th, RDLA will host an informational webinar about Rare Disease Week on Capitol Hill 2017 at 2pm ET. Come preparred with questions and our team will be available to answer them. Click here to register for the webinar. 

On Thursday, December 8th, Children's Cause Cancer Advocacy will host a webinar entitled What Does the New Administration Mean for Childhood Cancer? The event will begin at 2pm Pacific time - for more information and to register, click here. 

On Thursday, December 15th, the Information Technology & Innovation Foundation will host a briefing at the National Press Club on Innovation Priorities for the New Administration from 8:30AM until 11:00AM. To view the event summary and to register, click here. 

On Monday, February 27th, 2017, Rare Disease Week on Capitol Hill will kick-off in Washington, DC. Travel stipends are available (deadline December 18th) and will range from $300-$1,000 per attendee. The event will gather hundreds of rare disease patients for a full week of events. Click here for more information on the events and to apply for a travel stipend.

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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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