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Capitol Hill Updates

After a multi-year advocacy campaign from the patient advocacy community, the 21st Century Cures Act was signed into law by President Obama on December 13th. The legislation passed with significant bipartisan majorities in the House (392-26) and Senate (94-5). Click here to see the Congressional signing ceremony and the White House signing ceremony. Both events included seven year-old Max Schill of New Jersey, a rare disease patient with Noonan syndrome who has been a tireless advocate for Cures and the OPEN ACT.

The House and Senate also passed the National Defense Authorization Act, which contained language to substantially increase coverage of medical foods for patients via the TRICARE program. This is a huge victory for patients with metabolic disorders and our hope is that this coverage will eventually become standard for Medicaid, Medicare, and private insurance. At the time of this writing the legislation awaits signature from the President. 

Community Action Alerts & Policy Resources

The EveryLife Foundation for Rare Diseases is calling on patient organizations to endorse the OPEN ACT, legislation that could help double the number of treatments available to rare disease patients. Click here to sign your organization on or click here to see a list of the 173 organizations which have already endorsed this game-changing legislation. 

NORD has launched their State Report Cards to highlight where states are in terms of adopting policies to help rare disease patients. Among the findings is that 40% of states fail to meet the recommended federal requirements for newborn screening and the vast majority of states failed to enact prescription drug cost-sharing programs. For the full list and to see how your state ranks, click here

Community Events

On February 2nd, Novartis will convene the Blue Skies and Brickwork Health Policy Summit at 8:30am at the Knight Conference Center at the Newseum in Washington, DC. The event will cover many of the coming policy issues facing healthcare including value-based pricing and the Affordable Care Act. For more information and to register, click here

On Monday, February 27th, Rare Disease Week on Capitol Hill will kick-off in Washington, DC. The event will gather hundreds of rare disease patients for a full week of events and meetings with key Members of Congress. All events are free for advocates, and registration will open on January 4th. Click here for more information on the events.

On Monday, February 27th, the Foundation for Sarcoidosis Research will hold a Congressional lunch briefing from 12pm-2pm in HVC 201AB Capitol Visitors Center in Washington, DC. The briefing will highlight the impact of the Sarcoidosis Awareness Month Resolution and its impact. Stay tuned for registration information. 

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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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