Find more ways to take action for the rare disease community and access all RDLA resources and policy primers.
The Everylife Foundation for Rare Diseases asks you to encourage your member of Congress to sign on to a letter requesting that the Rare Disease Innovation Hub receive $5 million in funding and to support report language that recognizes the importance of the Hub’s work to transform rare disease therapy development. This initiative is being led by the House Rare Disease Congressional Caucus Co-chairs.
Patients & Partners for Medical Nutrition Equity encourages you to contact your legislators to cosponsor the Bipartisan Medical Foods & Formulas Access Act (S.3304 / H.R.5684). This bill would ensure that Medicaid, Children’s Health Insurance Program (CHIP), Medicare, and Federal Employees Health Benefit Program cover medical foods and formulas that the rare disease community relies on.
The Everylife Foundation for Rare Diseases asks you to encourage your member of Congress to Cosponsor H.R. 7118, supporting the Genomic Answers for Children's Health Act. This legislation clarifies Medicaid coverage of genomic sequencing, getting children needed care and preventing irreversible damage as the disease progresses during the search for diagnosis.
The National Foundation for Ectodermal Dysplasias asks advocates to contact their legislators to cosponsor the Ensuring Lasting Smiles Act (S.1677/H.R.3277). This bill would require a group health plan to provide coverage for medically necessary outpatient and inpatient items, and services related to the diagnosis and treatment of a congenital anomaly or birth defect that primarily impacts the appearance or function of the eyes, ears, teeth, mouth, or jaw.
The Plasminogen Deficiency Foundation encourages advocates to Urge Congress to Protect Access to Orphan Drugs by supporting a tariff exemption for lifesaving treatments.
Invite your Member of Congress to join the Rare Disease Congressional Caucus or thank them for being a member. View a full list of Caucus members or ask your members to join.
The Centers for Medicare & Medicaid Services seeks public input on an information collection related to proposing a new CMS Meeting Request Public Portal to streamline and standardize requests for external meetings. The comment opportunity focuses on improving administrative efficiency, transparency, and stakeholder engagement across CMS programs. Comments must be submitted by March 23, 2026. Learn more or submit input here.