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NORD’s annual State Report Card reveals progress and challenges for US rare disease community

The National Organization for Rare Disorders has released the latest edition of their annual State Report Card, rating all 50 states and the District of Columbia on how effectively they are meeting the needs of the rare disease community. The new findings reflect the progress made in 2022, while highlighting the next steps that must be taken to continue improving the lives, treatment, and care of people living with rare diseases. Some highlights include:

  • 14 states have not joined agreements which would help improve telehealth access to out-of-state physicians for rare disease patients.
  • During 2022, a number of states passed legislation improving timely, affordable access to medication and care for rare diseases.
  • In total, 24 states have introduced laws mandating the creation of a Rare Disease Advisory Council, including four in the past year.

For more details and a state-by-state breakdown of the findings, explore the full Report Cards on NORD’s website.


OpenEdition vous propose de citer ce billet de la manière suivante :
bartosb (24 mai 2023). NORD’s annual State Report Card reveals progress and challenges for US rare disease community. ELSIBI. Consulté le 19 janvier 2026 à l’adresse https://doi.org/10.58079/o6bt


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