Legislative News

Rep. Paul Ryan Likely to Take Speaker Role
It has been widely reported last week that Rep. Paul Ryan (R-WI-1) will likely become the next Speaker of the U.S. House of Representatives. He is known as a fiscal conservative, with a keen interest in balancing the budget.

Significant Budget Deal on the Horizon
The White House and Congressional leaders are closing-in on a significant budget deal that could lift spending caps on various federal programs. Assuming the deal is implemented, this could provide an opportunity for several agencies, like the Food and Drug Administration and National Institutes of Health, to be better positioned for funding increases in subsequent years. At the time of this writing, House Republicans have posted a draft of the bill, which must be approved by Congress and signed by the President before it can become law. 




Action Alerts & Policy Resources

EveryLife Foundation for Rare Diseases: Urge the Senate to Prioritize Innovation for Healthier Americans
In July, the House passed the historic 21st Century Cures Act, legislation that could be a game-changer for rare disease patients. But the companion initiative in the Senate, Innovation for Healthier Americans, has stalled. Click here to contact your senators and urge them to prioritize Innovation for Healthier Americans

Research!America: Urge the Senate to Boost Funding for Medical Research
Patients, researchers and other stakeholders across the nation are asking their Senators to ensure critical funding for the Food and Drug Administration (FDA) and National Institutes of Health (NIH) is included in the Senate companion to 21st Century Cures. Click here to take action. 

NORD: Sign-On Letter for Advancing Targeted Therapies for Rare Diseases
The National Organization for Rare Disorders (NORD) is circulating a patient organization sign-on letter on behalf of the Advancing Targeted Therapies for Rare Diseases Act of 2015 (S. 2030). The legislation provides authority for the FDA to use data that has been previously submitted for review of novel applications. This could be especially important for diseases and/or clinical trials that have particularly small sample sizes. Click here to read the letter. You may email Paul Melmeyer at NORD to sign-on - signing deadline is Friday, October 30th. 

Parent Project Muscular Dystrophy (PPMD): Sign-On Letter to Enhance Patient Engagement
PPMD is circulating a sign-on letter for groups who wish to support the Patient Focused Impact Assessment Act. The Act requires greater transparency in the FDA review process and will help ensure that patient voices are incorporated. To read the full letter and sign-on, click here. The deadline to sign-on is Friday, October 30th. 


I Am Essential: Coalition Sign-On Letter to Prevent Discriminatory Insurance Practices
The "I Am Essential" Coalition is circulating a sign-on letter to help prevent discriminatory practices in provisions of the Affordable Care Act. You may view the letter here and you may sign-on using this link. Signing deadline is 1pm on November 6th. 

NORD: State Progress Reports for Rare Diseases
The National Organization for Rare Disorders (NORD) released the first-ever State Progress Report to evaluate how states are serving patients with rare diseases. The State Progress Report focuses on four key policy areas: newborn screening, prescription drug cost sharing requirements, Medicaid eligibility levels and medical foods coverage.  Read the full report and find your state here




RDLA Events

RareVoice Awards Gala to Honor Rare Disease Advocates
On Wednesday, November 4th, join RDLA as we celebrate advocates from the rare disease community. We will be honoring Reps. Upton and DeGette, congressional staff, government agency leaders, and patient advocates from across the country. Click here for a full list of the nominees and to register. This widely attended event is free, but be sure to register while space remains. 

Rare Disease Congressional Caucus Briefing on Precision Medicine: New Frontiers for Rare Disease

On Thursday, November 5th, RDLA will host a briefing on precision medicine in Rayburn House Office Building Room B318 at 12-1pm. Speakers will include John Crowley, President and CEO of Amicus Therapeutics and Parent Advocate; Erynn Gordon, Director of Clinical Development at 23andMe; Matt Might, University of Utah Professor and Parent Advocate; and John Stone, Counsel, Energy and Commerce Subcommittee on Health. Click here to register. ACTION ALERT: Ask your Representative to send a staff member to the briefing

Save the Date: Monthly RDLA Webinar on November 18th
On Wednesday, November 18th at 2pm ET, RDLA will hold its next monthly webinar. The full agenda is forthcoming, but interested participants may reserve their spots by registering here. Please mark your calendar!




Capitol Hill Events

National Down Syndrome Society Capitol Hill Reception
On Wednesday, October 28th, join the National Down Syndrome Society to celebrate the aspirations and accomplishments of individuals with Down syndrome. The reption will take place on
from 5:30-7 p.m. at 439 New Jersey Avenue, SE in Washington DC. To RSVP, contact Kandi Pickard at kpickard@ndss.org.

FDA Hosts Second PDUFA Stakeholder Meeting 
On Thursday, October 29th, the Food and Drug Administration (FDA) is holding the second stakeholder meeting on the Prescription Drug User Fee Act (PDUFA). To attend, click here to register
Questions should be directed to PDUFAReauthorization@fda.hhs.gov. 

EveryLife Foundation for Rare Diseases: Community Congress Meeting 
On Wednesday, November 4th, the EveryLife Foundation for Rare Diseases will host its annual Community Congress meeting at 9:00am at 1200 New York Ave NW in Washington, DC (AAAS building). The event will feature keynotes from the Honorable Brain Baird, former Member of Congress and pulmonary fibrosis advocate, and Dr. David Fajgenbaum, co-founder of the Castleman Disease Collaborative Network and M.D. at the University of Pennsylvania. For the full agenda and to register, click here. The event is free.  

American Cancer Society Cancer Action Network: National Summit on Health Equity
On November 9th and 10th, the American Cancer Society Cancer Action Network will host a National Summit on Health Equity in St. Louis, MO. The Summit will address strategies for acheiving equity for cancer patients and will include stakeholders from across the advocacy spectrum. For more information and to register, click here


Join Us on Social Media
Stay up to date on breaking rare disease legislative news by following @RareAdvocates on Twitter and Facebook.



 ***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