Interested in giving the rare disease community in your state a voice in state government? Learn more about NORD’s work on Rare Disease Advisory Councils (RDACs) and how you can get involved with RDAC activities in your state.
https://rarediseases.org/rdac-overvew/
https://rareaction.org
https://rareaction.org/resources-for-advocates/state-profiles/florida
In the latest edition of NORD’s State Report Card we analyze all 50 states and Washington, D.C., on nine policy issues that impact the rare disease community. Each state has their own individual report card (as seen below), but for more background on the report and to view additional resources, please visit the State Report Card landing page.
More - https://rarediseases.org/policy-issues/medicaid-eligibility/
Medicaid Eligibility for Childless Adults: F
Medicaid Eligibility for Parents of a Dependent Child: D
Medicaid Eligibility for Pregnant Women: B
Medicaid Eligibility for Children: C
More - https://rarediseases.org/policy-issues/medical-nutrition/
More - https://rarediseases.org/policy-issues/newborn-screening/
Screening for RUSP Core Conditions Grade: B
Adding Screens Grade: A
Funding Grade: D
AC Grade: A
More - https://rarediseases.org/policy-issues/out-of-pocket/
More - https://rarediseases.org/policy-issues/medicaid-1115-waivers/
More - https://rarediseases.org/policy-issues/state-regulated-insurance/
Initial Plan Duration Grade: F
Renewals Grade: F
Maximum Duration Grade: F
More - https://rarediseases.org/policy-issues/rare-disease-advisory-councils/
Has a Rare Disease Advisory Council?: Yes
More - https://rarediseases.org/policy-issues/step-therapy/
Categories: D
Exceptions Process: F
Clinical Practice: F
Timeline: F
More - https://rarediseases.org/policy-issues/telehealth/
Member of Interstate Medical Licensure Compact (IMLC)?: Fail