RDLA September 2020 Newsletter

Congress Returned to DC: Representatives and Senators went home to their districts for the August recess. While the House has since returned to hold hearings and votes pertaining to the United States Postal Service and timely delivery of mail, the Senate returned on September 8. Upon return, the Senate is expected to continue work on a COVID-19 relief bill.

FY 2021 Appropriations Update: The House has passed 10 of the 12 FY 2021 Appropriations bills, including the bill for the Department of Health and Human Services. The Senate has passed 4 of the 12 FY 2021 Appropriations Bills. The FY 2020 appropriations will expire at the end of the fiscal year, September 30th, unless both the House and Senate pass the appropriations bill (and the President sign them into law) or pass continuing resolutions.

Thank You to Rare Across America Advocates: Thank you to all the rare disease advocates that participated in Rare Across America this summer. Advocates met with Representatives and Senators and their staffers all over the country virtually and in-person. The impact of these meetings is incredible and will continue to grow as Congress returns to D.C. from the August recess. For example, so far there are 8 new members of the Rare Disease Congressional Caucus totaling 179 members and 10 new cosponsors of the Creating Hope Reauthorization Act. If you would like to ask your Members to join the caucus and cosponsor the Creating Hope Reauthorization Act, click on the links to take action.

  Visit www.RareAdvocates.org/take-action to find more ways to take action for the rare disease community.

2020 Election Resources: RDLA wants to ensure rare disease patients are heard in local, state and federal elections around the country. With the 2020 election season approaching, we have compiled resources to assist advocates to ensure you are all prepared to vote! To access these resources, click here.

The FCS Foundation asks advocates to contact their Members of Congress to cosponsor the Helping Experts Accelerate Rare Treatments (HEART) Act, H.R. 7567. This legislation is designed to change the Food and Drug Administration’s process to review and approve drugs to treat rare diseases in the U.S by allowing participation from patients and clinicians. To learn more and ask your Representative to cosponsor the HEART Act, click here. 

EveryLife Foundation for Rare Diseases has joined with Kids V. Cancer to urge for the passage of the Creating Hope Reauthorization Act, H.R 4439/ S.4010. This bill will permanently authorize the Pediatric Priority Review Voucher (PRV) program. It will allow further opportunity to spur innovation in rare and neglected diseases that disproportionately impact children. To learn more and ask your Representative to cosponsor the Creating Hope Reauthorization Act, click here.

CA for Cures asks Californians to join their Yes on 14 Coalition in Support of Proposition 14. Proposition 14 will authorize $5.5 billion in state general obligation bonds to continue funding stem cell research and the development and delivery of treatments in California. To learn more, click here. 

The ALD Alliance is asking advocates to contact their Representatives to sign onto a letter to support funding for the Centers for Disease Control and Prevention (CDC) for timely implementation of newborn screening condition. End “death by zip code” by clicking here to contact your Member and learn more.

Ear Community Organization is asking advocates to contact their Members of Congress in support of the Ally's Act, H.R. 5485. H.R. 5485 is a national level bill that would ensure private insurance coverage for osseointegrated hearing devices, including bone anchored hearing aids and cochlear implants, for both children and adults. To learn more about how you can support Ally's Act and ask your Representative to cosponsor H.R. 5485, click here.

EveryLife Foundation for Rare Diseases is asking advocates to contact their Members of Congress in support of the Advancing Access to Precision Medicine Act. This legislation would ensure that many children and young adults living with an undiagnosed condition will have access to DNA sequencing clinical services beyond Whole Genome Sequencing that are currently out of reach. To contact your Representatives to cosponsor H.R. 4393, click here.

Below are upcoming policy and advocacy events of interest to the rare disease community. To view more policy and advocacy events for this year and beyond, please visit the RDLA events calendar.

RDLA September Webinar: Rare Disease Legislative Advocates is hosting our monthly legislative webinar on September 10, 2020 at 12:00pm ET. In honor of Newborn Screening Awareness Month, the RDLA Monthly Webinar will educate patient advocates about current legislation related to rare disease diagnostics. To register to attend the virtual webinar, click here

Rare Disease Congressional Caucus Briefing: Rare Disease Legislative Advocates, in cooperation with the Rare Disease Congressional Caucus, invites you to a Rare Disease Virtual Briefing entitled, “Saving Lives: Newborn Screening and Diagnostic Testing” on Thursday, September 22nd at 12:00 pm ET. To register, click here.

Rally for Medical Research Hill Day: The Rally for Medical Research Hill Day will take place September 17th. This event will be virtual, allowing constituents to participate in teleconference calls with their Members. To learn more or to register for the event, click here.

YARR Webinar: In collaboration with the Young Adult Representatives of RDLA (YARR) and Our Odyssey, we welcome all who identify in the young adult rare space to join us on "Why Your Vote Matters as a Young Adult". The webinar will cover voter registration (in person, by mail, or drop off), how to find out information about your candidates, how to navigate your way through a ballot and more. To register, click here.

DIA Short Course: The Drug Information Association is offering a short course designed to support patient advocacy groups, as well as potential research partners, jump start their planning efforts through interactive, small group consultation. The course will be held virtually October 5th. To learn more about the course or to register, click here.

Advanced Advocacy Academy: The Global Liver Institute is hosting this virtual event October 26th-30th. This program offers liver patients, caregivers, and professional the opportunity to learn from experts in the fields through a series of keynote speakers and live discussions. To learn more and register for this event, click here.

Newborn Screening Bootcamp: Expecting Health at Genetic Alliance and the EveryLife Foundation for Rare Diseases are partnering to host the 2nd Newborn Screening Bootcamp in October to provide resources to rare disease community stakeholders about the newborn screening system, facilitating pilot studies, building coalitions, navigating the RUSP nomination process, and preparing infrastructure to address challenges beyond the RUSP. To learn more and register for this event, click here.

RareVoice Awards: RDLA will be hosting the 9th Annual RareVoice Awards on Thursday, December 10th, 2020 at 7:00pm ET. Join us from home as we celebrate advocates who give rare disease patients a voice on Capitol Hill and in state government. This event is free and open to the public. Please click here to see our 2020 award categories and nominate an advocate by September 8th!

BIO Patient and Health Advocacy Summit: BIO is holding a virtual event October 28-29 to bring together patient advocacy organizations, academia, regulators, biotechnology industry, and other stakeholders to discuss policy issues and best practices. You can find more information here.

Newborn Screening Translational Research Network (NBSTRN) NBS Virtual Summit: NBSTRN is hosting a Newborn Screening (NBS) Virtual Summit to celebrate newborn screening awareness month, September 8-10. For more information or to register, click here.

Stay Connected

Stay up to date on breaking rare disease legislative news by following @RareAdvocates on Twitter and Facebook and rare_advocates on Instagram. Receive this from a friend? Sign-up for our email list to make sure you don’t miss monthly newsletters and action alerts!

***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 svonfelden@everylifefoundation.org


Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations.

EveryLife Foundation For Rare Diseases
1012 14th Street, NW, Suite 500 | Washington, District of Columbia 20005
202-697-7273 | info@everylifefoundation.org

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