What is Connective Issues?

Connective Issues is a platform built at the intersection of science, lived experience, and system-level frustration. Created by a rare disease scientist and patient, it brings clarity to the often confusing world of Ehlers-Danlos Syndromes (EDS), misdiagnosis, and invisible illness. Through research, storytelling, and advocacy, we’re working to unravel the medical disconnects that leave too many people without answers and offer tools that help patients and practitioners alike reconnect the dots.

What is the Mission of Connective Issues?

The mission is to bridge the gap between science, medicine, and real-life patient experience. We believe no one should have to suffer for years without answers simply because their symptoms don’t fit inside a medical checklist. Connective Issues exists to educate, advocate, and build something better, together.

What is the Vision?

A world where EDS and other invisible conditions are no longer dismissed, misdiagnosed, or misunderstood. We envision a diagnostic landscape shaped by interdisciplinary research, empathetic listening, and systems that catch patients before they fall through the cracks.

Who is behind this effort?

This platform is led by Jaime Prout, a PhD molecular geneticist, former biotech researcher, mom of four, and a patient with hEDS. After experiencing the all-too-common diagnostic odyssey firsthand and through family members, Jaime set out to create what she wished existed: a space where researchers, advocates, patients, clinicians, and providers could actually work together to elicit change.

What is the survey for?

The current EDS Community Survey is focused on collecting detailed insights from patients navigating Ehlers-Danlos Syndrome and related conditions. It explores diagnostic timelines, symptom patterns, misdiagnoses, and care experiences—all to identify recurring issues and unmet needs.

This data will directly support the upcoming book and help shape future outreach, education, and advocacy. Additional surveys for caregivers, clinicians, and other community members may follow as the project expands.

[Take the Survey → https://forms.gle/aEWyYTtKoJo5tpeo8]

What is The EDS Voices Project?

The EDS Voices Project is an ongoing 100-person interview series collecting deep, diverse insights from across the Ehlers-Danlos and rare disease landscape. Each conversation explores the lived experiences, frustrations, breakthroughs, and ideas of patients, caregivers, clinicians, researchers, and advocates.

The goal is to move beyond anecdotes and to document patterns, expose system-wide gaps, and highlight solutions that can improve recognition, diagnosis, and care. These interviews will directly shape the upcoming Connective Issues book and serve as a foundation for future awareness and education efforts.

If you’ve lived it, treated it, studied it, or fought for someone with it, contact me! We want your voice in the story.

What is this about a book?

The Connective Issues book will be a science-informed, patient-driven exploration of Ehlers-Danlos Syndrome (EDS) and the broader challenges of complex, often-overlooked conditions. Written by Jaime Prout, PhD, a molecular biologist and hEDS patient, the book combines personal narrative, clinical insight, and current research to examine why diagnostic delays are so common and what can be done to improve outcomes.

In addition to sharing lived experience, the book breaks down the underlying science and physiology of EDS to help both patients and clinicians better understand how to identify, diagnose, and manage the condition. It aims to serve as both a resource and a catalyst for change across healthcare and patient communities.

What kinds of research are you doing?

We’re blending narrative research with data-driven insights to uncover patterns in diagnostic delays, misdiagnosis, comorbidity trends, and systemic gaps. This includes:

• Patient-reported experiences

• Scientific literature synthesis

• Interviews with clinicians, researchers, and advocates

• Case study aggregation

If you’re a researcher, provider, or EDS expert, get in touch Let’s collaborate!

How can I help?

Glad you asked. Here are a few ways:

• Take the survey and share it with others

• Subscribe to the blog for new science breakdowns and stories

• Share your story or get interviewed

• Invite us to collaborate with your organization

• Coming Soon!

  • Follow and engage on social media (@connectiveissues)

  • Buy from the store, a portion of proceeds support the book and outreach efforts

How can I get in touch?

You can reach out directly via the Contact Page, email, or social media. Whether you’re a patient, provider, researcher, or ally, your message matters. Collaboration is the most important part of the connective tissue holding this project together.

Is this a nonprofit or a business?

Connective Issues is currently a patient-led, independent project, not a formal business or nonprofit. As it grows, the goal is to evolve into a sustainable platform for research, education, and advocacy. Every survey, share, and store purchase (coming soon!) helps support that mission.