People with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) often face delayed diagnoses, limited access to knowledgeable care, financial strain, and a lack of understanding across healthcare systems.
The Ehlers-Danlos Society is launching a new advocacy initiative in collaboration with Cassidy & Associates to help change that. This collaboration is funded by The Ehlers-Danlos Society.
Cassidy & Associates is a bipartisan government relations and public policy firm that will help advance a U.S. advocacy initiative focused on increasing federal awareness, engagement, and research support for EDS and HSD.
This initiative will focus on increasing awareness and understanding of the different types of EDS and HSD across Congress and the Executive Branch while supporting opportunities for federal research funding, policy engagement, education, and long-term systems change.
People with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) often face delayed diagnoses, limited access to knowledgeable care, financial strain, and a lack of understanding across healthcare systems.
The Ehlers-Danlos Society is launching a new advocacy initiative in collaboration with Cassidy & Associates to help change that. This collaboration is funded by The Ehlers-Danlos Society.
Cassidy & Associates is a bipartisan government relations and public policy firm that will help advance a U.S. advocacy initiative focused on increasing federal awareness, engagement, and research support for EDS and HSD.
This initiative will focus on increasing awareness and understanding of the different types of EDS and HSD across Congress and the Executive Branch while supporting opportunities for federal research funding, policy engagement, education, and long-term systems change.
As part of this initiative, in May 2027, The Ehlers-Danlos Society will bring together one advocate from each of the 50 U.S. states in Washington, DC, for the Advocacy Fly-In Summit, a four-day advocacy experience focused on education, storytelling, community building, and meetings with members of Congress and federal agencies.
The goal is to ensure the voices and lived experiences of people affected by all types of EDS and HSD are heard to help shape awareness, research priorities, healthcare policy, and future support.
This collaboration is one part of The Ehlers-Danlos Society’s Road to 2026 initiative with the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders. This global effort brings together researchers, clinicians, and community voices to advance understanding, diagnosis, and care for EDS and HSD worldwide. The Advocacy Fly-In Summit will help ensure that the advances delivered through Road to 2026 are supported by greater awareness, policy engagement, and research investment at the federal level.
This work aims to:
- Increase awareness of all types of EDS and HSD across Congress and the Executive Branch
- Advocate for federal research funding
- Elevate lived experience within policy conversations
- Support long-term systems change that can improve diagnosis, care, research, and quality of life
What Is a Fly-In?
A fly-in is an organized advocacy event where community members meet directly with policymakers and government leaders.
As part of the Advocacy Fly-In Summit, selected advocates will:
- Share their lived experiences with EDS or HSD
- Help policymakers and their staff understand the real-world impact of these conditions
- Advocate for increased awareness and research support
- Connect with others across the EDS and HSD community
- Represent the experiences of people affected by the different types of EDS and HSD across their states
Training, preparation, and support will be provided ahead of the summit.
Who Can Participate in the Fly-In?
This initiative is currently focused on U.S. federal advocacy efforts. Because the summit will involve meetings with U.S. lawmakers and federal agencies, participation in the Washington, D.C., Fly-In Summit is limited to advocates based in the United States.
We deeply value the perspectives and experiences of our global community outside the United States and hope to create additional opportunities for international engagement in future phases of this work.
Our goal is to build broad representation from across the country, ideally including advocates representing different lived experiences, backgrounds, geographic regions, EDS and HSD types, and perspectives across all 50 states.
Selection will consider a variety of factors, including lived experience, advocacy interests, communication strengths, diversity of perspectives, and the ability to help represent the needs of the broader EDS and HSD community.
Why Lived Experience Matters
Research and clinical expertise are essential. Personal stories help drive change.
When policymakers hear directly from people living with EDS and HSD, caregivers, clinicians, and families, they gain a better understanding of:
- The realities of navigating healthcare systems
- The impact of delayed diagnosis and limited access to care
- The urgent need for research, education, and support
- The real-world impact these conditions have on daily life
We welcome individuals with a range of experiences, including community advocacy, healthcare navigation, public speaking, caregiving, research, clinical experience, and lived experience with EDS and HSD.
We are especially interested in hearing from individuals who are passionate about creating change and can thoughtfully communicate the impact of EDS and HSD.
How to Get Involved
We are currently inviting U.S.-based individuals to register their interest in becoming a Fly-In Advocate.
By completing the interest form, you can share your connection to EDS and HSD, your advocacy interests, and any relevant lived experience. As planning progresses, selected advocates will be invited to participate in future stages of the initiative.
Submitting the form does not guarantee participation in the Fly-In Summit.
FAQs
The Advocacy Fly-In Summit is a three-day, in-person advocacy experience taking place in Washington, D.C., in May 2027.
Selected advocates from across the United States will come together to learn about federal advocacy, connect with others in the EDS and HSD community, and meet directly with members of Congress and Executive Branch officials to help raise awareness of the different types of EDS and HSD and advocate for increased federal research support.
The summit is part of a broader advocacy and awareness campaign led by The Ehlers-Danlos Society in collaboration with Cassidy & Associates.
Selected advocates will take part in:
- Advocacy preparation and training sessions
- Group preparation calls before the summit
- Meetings with Congressional and Executive Branch offices
- Community networking and collaboration opportunities
- Sharing their experiences and perspectives as part of advocacy conversations
Participants will receive briefing materials, schedules, talking points, and advocacy support throughout the process.
Advocates will generally participate in meetings as part of state or regional groups alongside experienced advocacy professionals.
We welcome interest from:
- People living with different types of EDS or HSD
- Parents, caregivers, and family members of those affected
- Healthcare professionals
- Researchers
- Advocates and community leaders
This initiative is currently focused on U.S.-based federal advocacy efforts. Therefore, participation in the in-person Fly-In Summit is limited to individuals based in the United States.
Formal advocacy experience is not required.
We welcome individuals with a range of experiences and backgrounds, including lived experience, caregiving, healthcare navigation, awareness work, public speaking, research, clinical experience, and community involvement.
Strong communication skills, a passion for creating change, and the ability to thoughtfully share the real-world impact of EDS and HSD are important parts of this initiative.
Not at the initial interest stage. However, documentation or confirmation related to a diagnosis may be requested during later stages of the application and selection process, where appropriate.
Our goal is to build broad representation across all 50 U.S. states while reflecting the diversity of the EDS and HSD community.
Selection will consider a variety of factors, including:
- Lived experience
- Advocacy interests
- Communication strengths
- Diversity of perspectives and backgrounds
- Geographic representation
- Representation across different EDS and HSD types
The selection process is still being finalized and is expected to include formal applications, interviews, and advocacy training in collaboration with Cassidy & Associates.
Our current goal is to select approximately 50 advocates, ideally with representation from every state.
All approved costs directly related to participation in the Advocacy Fly-In Summit will be fully funded by The Ehlers-Danlos Society.
This is expected to include:
- Airfare and travel
- Hotel accommodations
- Ground transportation
- Scheduled meals and summit activities
- Accessibility accommodations and other support needed for participation
We are committed to making this initiative as inclusive, accessible, and supportive as possible for participants with a wide range of needs.
Additional details will be shared with selected advocates during the planning process.
Selected advocates will receive training and preparation before the summit.
This is expected to include:
- Advocacy and policy education
- Preparation sessions focused on meeting with lawmakers
- Briefing documents and talking points
- Group preparation calls
- Guidance from experienced advocacy professionals
- On-site support throughout the summit
Participants will not be expected to navigate the advocacy process alone.
Our team will carefully review every submission. Individuals who register their interest can expect to receive communication about next steps or application outcomes in the coming weeks.
The Advocacy Fly-In Summit is specifically designed around direct engagement with Congressional and Executive Branch offices.
Selected participants are expected to take part in scheduled advocacy meetings with policymakers as part of organized state or regional advocacy groups.
Meeting schedules and logistics will be coordinated in advance with support from The Ehlers-Danlos Society and Cassidy & Associates.
The Advocacy Fly-In Summit is currently planned as an in-person initiative.
We understand that travel may not be possible for everyone. We encourage individuals who cannot participate in person to stay connected to future advocacy opportunities, storytelling initiatives, awareness activities, and virtual engagement opportunities as this work continues to grow.
There will be other ways for community members to share their voices and perspectives and contribute to this broader advocacy movement.
While the Fly-In Summit itself is focused on U.S. federal advocacy, we recognize that EDS and HSD affect individuals and families worldwide.
We are exploring additional opportunities for members of our global community to contribute through virtual engagement, storytelling initiatives, awareness campaigns, advocacy activities, and future participation opportunities.
Global perspectives remain an important part of this work.
Improving diagnosis and care requires change across the entire healthcare system, and we will work to support implementation of the Road to 2026 publication beyond research and into real-world care. This will include initiatives to:
- Help us better understand and address barriers to diagnosis, particularly in primary care, and develop tools to support clinicians.
- Support alignment of diagnosis and care updates with ICD-10/ICD-11 coding, insurance systems, and healthcare infrastructure.
- Develop a new Model of Care so people with Ehlers-Danlos syndromes and hypermobility spectrum disorders can access coordinated, effective care after diagnosis.
- Help increase prioritization of and access to federal funding for these conditions.
Do you have a question that’s not covered here? Please contact us.
