STRiDE – the State Rare Disease Education Initiative – is a national program of the Foundation for Cell & Gene Medicine to educate and empower patients and caregivers and engage with key stakeholders at the state level, including physicians, local and regional provider networks, state Medicaid directors and other key influencers in the rare disease community.
STRiDE was developed because availability and access to cell and gene medicines for major parts of the national rare disease population will largely depend on support for these programs at the state and local level from a number of key constituencies. This support will only come with better understanding of the potential of cell and gene therapy, and access to relevant, actionable information and data. Federal programs are ongoing, yet a critical gap in state-focused initiatives remains.
STRiDE’s mission is to engage and inform key members of the rare disease community at state and local levels about the changing landscape and progress of rare disease diagnosis, treatment and intervention.
The objective of the STRiDE pilot project is to initiate a state-focused rare disease policy and gene therapy educational campaign in six states – CA, MA, NY, FL, OH, NC. The STRiDE pilot provides programs and content to help rare disease stakeholders and key decision makers implement strategies that facilitate patient access to transformative cell and gene therapies including those using genetically modified cells. The STRiDE effort will provide essential information about the economic and societal impact of these therapies and deliver potential policy solutions focused on creative payment models. The work will be led by the Foundation for Cell & Gene Medicine working in cooperation with other partner organizations.
The STRiDE pilot is directed to rare disease community leaders and other key influencers who are integral to the dialogue at the state level, and state level health care policy stakeholders who impact the ability of patients to access gene therapies. These stakeholders include:
- Rare disease patient group leaders
- State and regional rare disease advisory council leadership
- Medicaid program personnel with responsibilities in program oversight and management (Medicaid Directors), therapies and pharmaceuticals (Medicaid Pharmacy Directors), Medicaid Managed Care oversight, and others
- Legislators with responsibilities in oversight committees for the Medicaid program, Departments of Health and Welfare (depending on the state), and appropriations for health programs
- Executive branch staff within the office of the Governor, such as health policy, budget, and Medicaid oversight staff and advisors
- Groups interested in equitable access issues
- Healthcare professional groups
- Centers of Excellence
- Good government advocacy groups that could be influential at state level