About The Informed Patient Project
Born from personal experience. Built for everyone who deserves to be heard.
We create the resources we wish we had
For many people living with hypermobile Ehlers-Danlos Syndrome, POTS, MCAS, and other under-recognized conditions, the path to diagnosis is not measured in weeks or months — it is measured in decades. Not because the conditions are rare. Not because the symptoms are ambiguous. But because the medical system was not taught to recognize them.
The Informed Patient Project exists because of that gap. Created by a patient who navigated years of dismissal, misdiagnosis, and the exhausting experience of being told everything is normal when everything is not, this project was built out of necessity.
"You shouldn't need to arrive at an appointment hoping your provider has heard of your condition. You should be able to bring the information yourself."
— The Informed Patient ProjectTraditional patient education flows one way: from doctor to patient. We reverse that. Our resources flow from patient to provider — visual, scannable, evidence-backed infographics that a time-pressed specialist can absorb in minutes and act on immediately.
This is not about blaming providers. Most physicians genuinely want to help — they simply were not trained in these conditions. Our resources give them what they need to be better partners in your care.
Core Values
Patient Validation
We believe patients. Their experiences are real even when tests are normal, symptoms are invisible, and previous providers were dismissive. Being undiagnosed or misdiagnosed for years does not mean nothing is wrong.
Evidence-Based Advocacy
Our resources cite peer-reviewed research and established medical guidelines. We do not promote unproven treatments or undermine legitimate medicine. We advocate for better understanding within the medical system, not against it.
Accessibility — No Exceptions
Our materials are free. No patient should face a paywall when trying to communicate their condition to a provider. Donations sustain us but never restrict access.
Clarity Over Complexity
We design for busy providers and exhausted patients. Visual hierarchy, color coding, and scannable formats serve communication — not decoration. If it takes more than 3 minutes to scan, we redesign it.
Dignity & Respect
We speak to providers as partners, not adversaries. We equip patients to advocate without aggression. We acknowledge that most providers want to help but may lack information.
Community-Centered Growth
The conditions we address are determined by the patients who need resources most. Your suggestions, your experiences, and your feedback directly shape what we create next.
How we create each resource
Every infographic is built on the same foundation: lived experience, rigorous research, and design that respects everyone's time.
Identify the Gap
We begin with conditions that have the longest diagnostic delays, the most dismissal, and the greatest need for provider education.
Research the Evidence
Every claim is sourced to peer-reviewed journals, established medical societies (AJMG, EDS Society, etc.), or clinical practice guidelines.
Design for Clarity
Color-coded sections, DO/DON'T/ORDER-REFER formats, body diagrams, and symptom tracking sections — designed for appointment-day use.
Add the Patient Voice
Each resource includes fillable sections for patients to document their specific symptoms, pain levels, medications, and appointment goals.
Review & Refine
Resources are reviewed against current medical literature and updated as guidelines evolve. Version numbers and dates are included on every PDF.
Release Free
No paywall. No membership. No email required. Every resource is freely available to every patient who needs it.
Built for clinical credibility
Peer-Reviewed Citations
Sources from AJMG, Rheumatology, and established medical societies
Version-Dated
Every PDF includes version number and publication date for traceability
DO/DON'T/ORDER/REFER Format
Actionable clinical guidance — not just background information
Specialist-Specific
Targeted for the specific specialty receiving the resource — not generic overviews
Designed for Busy Providers
Scannable in under 3 minutes — color-coded, visual, zero jargon overload
Patient-Fillable Sections
Symptom severity, medication lists, and appointment goals built directly into each PDF
What we are — and are not
The Informed Patient Project provides educational resources to support conversations between patients and healthcare providers. We are not a medical organization and do not provide medical advice, diagnosis, or treatment recommendations.
Our resources are designed to help patients communicate with their providers — not to replace clinical judgment. Every treatment decision should be made between a patient and their qualified healthcare team.
We do not promote unproven treatments. We do not discourage patients from seeking or following medical advice. We advocate for better understanding and communication within the existing medical system.