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Capitol Hill Updates

Congress returns to Capitol Hill this week with a potential crisis over government funding looming. The government is currently funded on a Continuing Resolution (CR) or stopgap measure until a longer-term agreement can be reached for the remainder of the fiscal year. This means that Congress must reach an agreement with the White House by Friday or much of the federal workforce will be furloughed until a deal can be brokered. Some analysts believe that President Trump may use this opportunity to force a compromise on healthcare reform proposals and tax reform. However, with Republicans still split on both issues, a funding agreement and compromise on tax and healthcare reform by the week's end seems unlikely.

Across the U.S. and in many cities around the world, scientists and concerned citizens gathered to participate in the March for Science. In Washington, DC, thousands turned out to call on elected officials to make science a higher priority in the nation to ensure that research is fully funded and that science remains an indispensable part of the public policy process.  

The Senate Health, Education, Labor, and Pensions (HELP) Committee is scheduled to vote today on the nomination of Dr. Scott Gottlieb to be the next Comissioner of the Food and Drug Administration (FDA). During the Committee's hearing on the nomination earlier this month, many Democrats expressed concern about Dr. Gottlieb's past work with industry. However, it is widely expected that the committee vote will garner enough votes to proceed to the Senate floor for a final confirmation vote, which has not yet been scheduled.  

Community Action Alerts and Policy Resources

The Coalition for Health Funding (CHF) is circulating a sign-on letter for organizations to call on Congress to boost funding for the agencies that fund vital health research, such as the National Institutes of Health (NIH) and FDA. The deadline to sign has been extended to COB on Friday, April 28th. 

Research!America is asking individuals to contact Congress to urge them to pass a budget to keep the government running and to boost funding for NIH and other key research agencies. To view the alert and to take action, click here

The National Organization for Rare Disorders (NORD) is asking advocates to urge Congress to protect the Genetic Information Nondiscrimination Act (GINA), which prevents employeers from discriminating against patients based on their genetics or medical history. Click here to view the letter and to contact Congress

Kids V Cancer is seeking support for the RACE for Children Act (S. 456, HR 1231), which would update existing law to require companies to gather data about drug safety and efficacy in pediatric populations. To learn more about the legislation and to take action, click here

The EveryLife Foundation for Rare Diseases is calling on advocates to contact Congress in support of the Orphan Product Extensions Now, Accelerating Cures and Treatments Act (OPEN ACT, HR 1223), which would dramatically increase number of rare disease treatments through repurposing. Take a moment to contact your Representative to ask for co-sponsorship of this legislation

Community Events

The Biologics Prescribers Collaborative will host a congressional briefing in Room 562 in the Dirksen Senate Office Building on Thursday, April 27th, from 8:30-9:30am. The briefing will cover the current biosimilars policy framework and its impact on prescribing and reimbursement. 

The Coalition for Clinical Trials Awareness will host a policy roundtable entitled, "How Can the Government Increase Clinical Trials Awareness?". The event will be held on Wednesday, May 3rd, from 11:30am to 1:00pm at the Capitol Vistors Center. For more information and to register, click here

The FDA will convene a public workshop on Friday, May 12th, from 9am to 3pm to help patient organizations learn how to successfully engage with the Center for Drug Evaluation and Research (CDER). Click here for more information and to register. You can participate in-person or by livestream. 

The EveryLife Foundation is partnering with Global Genes to convene RARE on the Road – Rare Disease Leadership Tour this summer. It will consist of three events designed to educate rare disease patients on how to successfully advocate and build their networks. A limited number of $100 travel scholarships are available for the Kansas City and Portland events. Click on the links below to register, or click here for more information on the RARE on the Road program including the link to apply for a travel scholarship:

RDLA will convene the next Rare Disease Congressional Caucus Briefing on Thursday, May 18th, at 11:00am in Room B-318 of the Rayburn House Office Building. The briefing will feature Members of Congress and cover a variety of issues relating to incentives for the development of rare disease treatments. Click here for the full agenda and to register.

The National Organization for Rare Disorders (NORD) will hold the 2017 Rare Impact Awards at the Ronald Reagan Building in Washington, DC on Thursday, May 18th. NORD will honor advocates and policymakers for their advocacy at the state and federal levels. For more information and to register, click here

The American Cancer Society Cancer Action Network (ACS CAN) will hold an event entitled, "Cancer Moonshot: One Year Later" on Tuesday, June 27th. For more information and to register, click here. 

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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. If you'd like your alerts and/or events included, please email Max Bronstein at mbronstein@everylifefoundation.org.

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