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Capitol Hill Updates

Congress is on recess and in campaign mode, but the debates and discussions around critical health issues continue to swirl. When Congress resumes after Labor Day, there will be a number of issues that will have to be addressed prior to the election including: Zika funding, federal appropriations, and most importantly for our community, the landmark 21st Century Cures Act. Discussions are ongoing and support among Congressional leadership is growing for the legislation, which may also encompass the White House's Cancer Moonshot initiative. Meanwhile, rare disease advocates are fanning-out across the country to make sure their legislators understand the importance of this legislation. 

Meanwhile, at the state level in California, SB 1095, legislation to improve and expand newborn screening, has passed the final legislative hurdle with yet another unanimous vote to pass out of the state Assembly and move to the Governor's desk for final approval. The bill as amended would require California to screen for any and all diseases recommended at the federal level by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children. The state would have two years of time to implement screening programs for new diseases added at the federal level. This will help ensure that states screen for all of the rare disorders recommended by public health professionals and will speed the screening implementation process, ultimately helping to ensure that patients get treated as early as possible. 

Community Action Alerts & Policy Resources

The EveryLife Foundation for Rare Diseases is calling on advocates to help move 21st Century Cures with an Advocacy Photo-Blast. Advocates can send in photos with their name, state, and #CuresNOW hashtag, which will be shared with the U.S. Senate. To see examples and to submit your own, click here. 

Children's Cause Cancer Advocacy is running an action alert to ask Congress to increase funding for the National Institutes of Health. To learn more and to take action, click here

Research!America is asking advocates to step-up the fight for 21st Century Cures with several ways to take action. To get engaged and learn more, click here. 

The EveryLife Foundation for Rare Diseases is asking patient organizations to support their newborn screening legislation, SB 1095. Patient organizations may get involved by sending letters to Governor Brown and by signing-on in support of this life-saving legislation. Individuals living in California can also send a letter us this short form. We need all hands on deck to ensure the bill crosses the finish line!

Community Events

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 (Centers for Disease Control and Prevention 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 Wednesday, September 14th at 3pm Eastern, RDLA will hold its next monthly meeting and webinar. Tune in and register here to get the latest news from Capitol Hill and beyond. 

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 to learn more and to register.

On Monday, October 17th, NORD will kick-off its annual Rare Diseases and Orphan Products Breakthrough Summit in Arlington, Virginia. The event will include representatives from over 80 patient organizations, industry leaders, and FDA staff. Click here for more information and to register

On Thursday and Friday, November 3-4th, BIO will host its annual Patient & Health Advocacy Summit at the Mayflower Hotel in Washington, D.C. For more information and to register, click here

Save the Date! On November 16th, RDLA will host the annual RareVoice Awards Ceremony in Washington, DC. Help us celebrate outstanding rare disease 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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