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Capitol Hill Updates

With the election rapidly approaching, many in the rare disease community are beginning to wonder how the results will impact policy for rare disease patients in 2017 and beyond. The EveryLife Foundation for Rare Diseases will be holding a free event to discuss the outcomes of the election, with more details listed below.

21st Century Cures is among the issues that Congressional leadership has pledged to take up after the election. To date, there has been difficulty reaching agreement on funding levels for proposed increases in the bill, but advocates are optimistic that legislative action could occur as early as the week of November 14th. In order to ensure that Congressional leaders stand by their pledge and reach an agreement, advocates must unite and demand that this bill remains a top priority in the lame duck session. Our best chance of passing this legislation will be by keeping the bill's key provisions intact and as a single legislative package with its many supporters calling on Congress to take action. With few legislative days left in the calendar for 2016, this is our last chance to ensure that Cures becomes law.

Community Action Alerts and Policy Resources

To keep up the pressure on Congress, the EveryLife Foundation for Rare Diseases has launched a photo campaign with advocates  posting photos in support of #CuresNOW on social media, tagging their Members of Congress. Click here to see examples and to join the hundreds of patients who have already participated.

As part of the Cures advocacy campaign, the EveryLife Foundation will hold a Day of Action once Congress reconvenes after the election. Mark your calendar on Tuesday, November 15th, and stay tuned for more information. 

Community Events

At noon ET on Thursday, October 27th, Health IT Now will host a mebership meeting with Research!America to discuss use of real-world evidence by the FDA for medical devices. The meeting will occur at 600 14th St NW DC, Suite 300 in Washington, DC. For more information and to register, click here. 

AT 2pm MST on Monday, October 31st, Research!America will convene a town hall in Denver, Colorado entitled, Assuring Public Health and Prevention is a High Priority for the Next Congress and President. The event will take place at annual meeting of the American Public Health Association. For more information and to register, click here. 

On Thursday and Friday, November 3rd and 4th, BIO will host its fifth annual Patient and Health Advocacy Summit at the Mayflower Hotel in Washington, DC. The even will bring together patient advocacy organizations with individuals from acadmeia, industry, and FDA. For more information and to register, click here. 

On Tuesday, November 15th, at noon ET, the Rare Disease Congressional Caucus will host a briefing on Driving Innovation for Lifesaving Therapies through PDUFA Reauthorization. The briefing will be held in the Rayburn House Office Building in room B-318 and lunch will be provided. To learn more and to register, click here. 

On Wednesday, November 16th, the EveryLife Foundation for Rare Diseases will host the annual Community Congress meeting at 8:30am ET at 1200 New York Avenue in Washington, DC. This free event will feature a panel of experts that will explore the impact of the elections on rare disease policy and will feature a keynote by Dr. Phillip Reilly, author of Orphan: The Question to Save Children with Rare Genetic Disorders. Lunch will be provided but participants must register while seats remain in order to attend the meeting. 

On Wednesday, November 16th, RDLA will hold the fifth annual RareVoice Awards event beginning at 6pm ET at the Arena Stage at 1101 16th Street SW, in Washington, DC. This year, Senator Orrin Hatch and Representative Joseph Crowley will be honored along with rare disease advocates who have made an impact for our community. For the program and registration, click here. We are nearing capacity for this event.

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. 

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