State Rare Disease Education Initiative (STRiDE)

STRiDE is a national program to engage and inform key members of the rare disease community at state and local levels about the changing landscape and progress of cell and gene medicine for diagnosis, treatment and intervention in rare disease.

The State Rare Disease Education Initiative (STRiDE) was developed because availability and access to cell and gene medicines for the national rare disease population depends on strong support from key constituencies at the state and local level. Empowered by relevant data and actionable information, families, patient organizations, and key decision-makers can better understand the potential of cell and gene therapies and improve access to innovative therapies. The Foundation wants to fill a critical education gap at the state level.

Project Objective

The objective of the State Rare Disease Education Initiative (STRiDE) is state-focused and patient-centered education about cell and gene therapy for rare diseases beginning in six states - NC, OH, TX, MA, NY, CA – with additional states to be added. The STRiDE program provides education 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. We actively engage with the community in partnership to aggregate, evaluate, and refine critical scientific and medical information in light of patient needs. The STRiDE effort amplifies the patient’s voice.  STRiDE will provide essential information about the economic and societal impact of these therapies specific to each state and amplify the need for creative payment models. The Foundation for Cell and Gene Medicine leads this charge and collaborates with other partner organizations for greater effectiveness.

Target Audience

The State Rare Disease Education Initiative (STRiDE) program works through rare disease community leaders to educate at the state level about cell and gene therapies. The audiences include:

• Rare disease patient group members

• Individuals and families without rare disease organization membership

• Individuals working with Medicaid program personnel who have responsibilities in program oversight and management, therapies and pharmaceuticals, or Medicaid Managed Care oversight

• Individuals in conversation with Departments of Health and Welfare (depending on the state)

• Patient Groups interested in equitable access issues

• Healthcare professionals and groups

• Centers of Excellence

• Good government groups at state level

STRiDE Program

STRiDE consists of two parallel programs.        

1. Science & Medicine Education: to provide critical educational resources to inform state rare disease stakeholders and influencers on the transformative treatment potential of gene and cell medicine

2. Patient Access Education: to outline the value of cell and gene medicine and amplify the need for equitable patient access

Essential Activities:

1. Creating a coalition of Rare Disease Educational Forum (RDEF) members as stakeholders to support development of transformative cell and gene medicine treatments in NC, OH, TX, MA, NY, and CA

2. State healthcare education workshops on improved accessibility for gene therapy for rare disease

3. Web-based initiative programs, educational materials, patient access experiences, and updated content

4. Introductory events at state level with support from national and regional organizations where possible

5. Measurable progress with defined benchmarks towards better patient access and therapy coverage

6. Editorial stories focused on the significant impact of gene therapies, the importance of patient access, and progress of state champions.

Funding Structure

The State Rare Disease Education Initiative (STRiDE) program is supported via charitable contributions. The Foundation asks interested companies and foundations to come alongside other organizations to fund this effort. Suggested contributions are:

Benefits of Supporting STRiDE

We urge you to find out more about how your company’s contribution can make a difference.   

STRiDE Program Contact:

Cynthia Kuan, Program Director
ckuan@thearmfoundation.org