Recently, Cure CMD added their name to sign-on letters in support of the STAT Act and the BENEFIT Act. We encourage you to contact your Members of Congress and ask them to cosponsor these bills.
Speeding Therapy Access Today (STAT) Act of 2021,
H.R. 1730/S. 670

The STAT Act seeks to enact targeted, impactful, and attainable policy reforms at the Food and Drug Administration (FDA) to accelerate development of therapies across the spectrum of rare diseases and disorders and facilitate patient access to such therapies.

This legislation would provide patients and advocates the ability to play a larger role in the Food and Drug Administration’s (FDA) benefit-risk framework for drug approval.

This bill was reintroduced in the Senate last month but is still in need of champions in the House.
Proposed Legislation Highlight

What it would do: This bill would protect the rights of airplane passengers with disabilities, improve air travel safety and close service gaps that passengers with disabilities frequently encounter in air travel.

Why it is important: For 35 years, the Air Carrier Access Act (ACAA) has prohibited discrimination based on disability in air travel. Despite this effort, too many individuals with disabilities encounter significant barriers in air transportation—such as damaged assistive devices and wheelchairs, delayed assistance, ineffective communications, and lack of seating accommodations. Absent legislation ensuring 21st Century access to air travel, people with disabilities will be left behind and unable to compete in today’s economy or enjoy travel opportunities other Americans experience.

Why it is important to the Cure CMD community: Many CMD community members face barriers to air travel and/or have experienced damaged equipment while traveling.

  • Attend the RDLA April Webinar on May 20th at noon ET. This month's topic is An Overview of Drug Pricing Policy Priorities & Current Proposals in Congress.

  • The next Rare Disease Congressional Caucus Briefing will be held May 27th at 1:00pm ET. The title of the briefing is “Focusing on Patient Outcomes—Values Based Policies’ Emphasis on Outcomes of Value to Patient Communities”. You can learn more about the caucus briefing and register here.

  • Rare Disease Week is happening virtually July 14-22! Advocate with your Members of Congress from your couch. Registration is open through June.
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Thank you for your work!
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