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RDDC Policy Initiatives

RDDC advocates for legislation and policies that alleviate the disproportionate burden of rare diseases on historically marginalized populations, increase health equity, and empower patient voices in all aspects of the healthcare process.

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RDDC’s members and partner organizations are made up of rare disease experts, patients, health care professionals, diversity advocates, and industry leaders who advocate, guide, and provide current knowledge to help RDDC inform the Federal legislative and Administrative process. RDDC maintains extensive relationships with members of Congress and the Administrative branch, and furthers our important goals through a wide-range of actions, from directly speaking to policymakers, to introducing legislation and commenting on Administrative actions.

Engage

  • Members of Congress and Congressional staff to promote RDDC’s policy agenda.
  • RDDC member organizations to collaborate and elevate the state and national policy agenda.
  • The Administration (e.g. HHS, CMS, FDA) on ensuring that regulations and rules promulgated support rare disease communities.
  • RDDC workgroups to continue to find areas for cross collaboration and continued promotion of work product.

Lead

  • Rare disease agenda in the White House Women’s Initiative.
  • The development and introduction of RDDC signature legislation.
  • Hill outreach publicizing the results of the Patient, Provider, and Caregiver Journey. (PPCJ) Barriers to Care Survey: Promotion, Dissemination, and Endorsement.
  • RDDC Grassroots Activation Campaign.
  • Polices that encourage the clinical trial enrollment of patients with rare diseases and the study of off-label drugs.
  • Funding to advance the study and treatment of rare disease and its impact on diverse populations.
    • H.R. 4714 – Pediatricians Accelerate Childhood Therapies Act  (S. 2345)
    • S. 2333 – Pandemic and All-Hazards Preparedness and Response Act
  • Long-term telehealth solutions, which improve and equalize access to specialized medical providers for rare disease patients.
  • Improved access to newborn screening and genetic testing, which can lead to early detection.
  • Policies that support Medicare Dependent Hospitals (MDHs) that support rural communities. 
    • S. 1110 – Rural Hospital Support Act
    • H.R. 6430 – Assistance for Rural Community Hospitals Act (“ARCH”)

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