RACE is a unique training program developed by rare disease advocates with 50 years of experience working in Medicaid, Medicare, commercial insurance, social services, and healthcare. The goal of the program is to share our knowledge as well as the lessons we have learned in helping our own rare disease community and bring that awareness to the greater rare disease world. We are looking to train rare disease advocacy organizations that are looking to assist their community with access to medically necessary therapies and equipment, with preference given to organizations that serve rare disease groups with either an approved cell/gene therapy or one in their pipeline.

This program is focused on information sharing and data reporting to increase general knowledge on coverage, access barriers and to make healthcare more patient centric. We believe that by working together as a rare disease community we can determine and monitor payer response to high cost/low utilization treatments as science rapidly approaches cell/gene therapies and help change the landscape for these therapies going forward.

Topics include navigating the following:

  • Private Insurance
  • Pharmacy Coverage
  • Medicaid
  • Medicare
  • How Insurance Works
  • Private Insurance Appeals
  • Medicaid Appeals
  • Medicaid Waivers
  • Social Security Programs
  • Engagement in DUR/P&T Meetings

Interested in having your rare advocacy organization considered for RACE? Contact Amy Aikins at amy@littleherculesfoundation.org.

The following rare disease advocacy organizations have completed the RACE Program:

FSHD Society

National Niemann-Pick disease Foundation ( NNPDF)

Maisie’s Army (SMA)

Dravet Syndrome Foundation

Friedreich's Ataxia Research Alliance (FARA)

International Rett Syndrome Foundation

Foundation for Angelman Syndrome Therapeutics

Down Syndrome Association of Central Ohio


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