Living With a Rare or Genetic Condition?

Patients with rare or genetic conditions may face significant delays before FDA-approved therapies are covered STATE PATIENT FDA approves therapies for rare and genetic conditions Your state Medicaid program may set eligibility criteria which make it more difficult to access the latest therapies for rare and genetic conditions Living with a rare or genetic condition? [...] The Rare & Ready Genetic Condition Coalition believes state policies must make sure that patients with rare conditions can get the care they need. [...] Patients with rare or genetic conditions deserve access to new FDA-approved therapies as soon as they are available. [...] We need to mitigate state Medicaid program hurdles that limit access. Outcomes-based arrangements offer hope for those with rare conditions to access transformative treatments including gene and cell therapies. Telehealth across state lines helps ensure accurate diagnosis, good disease management, and access to the small number of rare disease experts. If these principles are impor [...] We welcome all rare disease organizations and there is no financial commitment to join. [...] A G E N E T I C C O N D I T I O N C O A L I T I O NC O A L I T I O N M E M B E R S Supported by BioMarin & Ultragenyx Join the conversation on X @rare_ready rareandready.org THE CHILDREN’S MEDICAL RESEARCH FOUNDATION, INC.® ®