Evidence-based infographics designed by patients, for providers. Free for anyone who needs them — always.
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Comprehensive overview for PCPs. Covers systemic involvement, the hEDS trifecta (hEDS + POTS + MCAS), DO/DON'T/ORDER-REFER guidance, symptom tracking, and the Mankoski pain scale.
Accessible for loved ones. Covers what hEDS feels like, why it's invisible, how to be genuinely supportive, and what not to say.
Targeted for gastroenterologists. Covers GI manifestations, MCAS and histamine intolerance, dysmotility, common misdiagnoses, and GI-specific symptom tracking.
For cardiologists and electrophysiologists. Covers POTS and dysautonomia in hEDS, cardiovascular screening considerations, and cardiology-specific symptom tracking.
For neurologists. Covers small fiber neuropathy, central sensitization, dysautonomia, and neurological manifestations of hEDS with specialty-specific symptom tracking.
For rheumatologists. Covers the 2017 diagnostic criteria, joint hypermobility, systemic involvement, differential diagnosis considerations, and rheumatology-specific symptom tracking.
For allergists and immunologists. Covers Mast Cell Activation Syndrome, mediator testing, trigger management, and the relationship between MCAS and hEDS.
For OB/GYNs. Covers hormonal cycling effects on symptoms, pregnancy and postpartum considerations, gynecological manifestations, and OB/GYN-specific symptom tracking.
For orthopedic surgeons. Covers surgical precautions, tissue fragility, joint instability patterns, anesthesia and wound healing considerations, and orthopedic-specific symptom tracking.
For physical therapists. Covers safe exercise programming, the Muldowney Protocol, proprioception and stabilization priorities, pacing principles, and PT-specific symptom tracking.
For dentists and oral surgeons. Covers anesthesia resistance, TMJ considerations, tissue fragility, MCAS and medication sensitivities, and dental-specific symptom tracking.
For pain management specialists. Covers central sensitization, chronic pain patterns in hEDS, medication considerations including LDN, and pain-specific symptom tracking using the Mankoski scale.
For pediatricians. Covers family history patterns, pediatric symptom presentation, the diagnostic journey for children and adolescents, and age-specific considerations for hEDS and related conditions.
For psychiatrists and psychologists. Covers the high prevalence of anxiety, depression, and ADHD/autism overlap in hEDS, the impact of chronic pain and medical trauma on mental health, and considerations for treatment planning.
For optometrists and ophthalmologists. Covers ocular manifestations of hEDS, connective tissue considerations, lens and retinal risk factors, and vision-specific symptom tracking.
A curated list of organizations, podcasts, and educational resources we recommend. These are independent resources — not affiliated with The Informed Patient Project.
The leading international nonprofit dedicated to the Ehlers-Danlos syndromes and hypermobility spectrum disorders. Publishes the 2017 diagnostic criteria, funds research, maintains a healthcare provider directory, and offers condition-specific resources for patients and clinicians.
Best for: Newly diagnosed patients, provider education, research updates
A patient-led nonprofit founded in 2011. Produces articles, newsletters, webinars, documentaries, and patient guides covering hEDS, dysautonomia, MCAS, and related conditions. Translates emerging research into accessible, actionable information.
Best for: Patients navigating life after diagnosis, support group leaders, condition education
The primary international nonprofit focused on POTS and dysautonomia. Funds research, advocates for patients at the policy level, and maintains extensive educational resources for patients, families, and providers.
Best for: POTS patients and their providers, research updates, legislative advocacy
A 501(c)(3) nonprofit founded in 1995, serving patients with mastocytosis, MCAS, and related mast cell diseases. Provides patient and provider education, funds research grants, and runs a TeleECHO program connecting providers with mast cell specialists.
Best for: MCAS patients, providers seeking specialist training, research funding updates
A grassroots 501(c)(3) nonprofit run entirely by volunteers. Funds peer-reviewed POTS research, publishes in scientific journals, and provides patient and provider education. Has awarded over $660,000 in research grants.
Best for: POTS patients, research-minded providers, community support
A UK-based charity founded in 2015 and run by people with lived MCAS experience. Holds the PIF TICK quality mark for trusted health information and actively engages with immunologists and researchers internationally. Resources are useful beyond the UK context.
Best for: MCAS patients and providers seeking clear clinical explainers
Hosted by Dr. Linda Bluestein, a hypermobility specialist with EDS herself. Covers hEDS, HSD, POTS, MCAS, and related conditions through interviews with clinicians, researchers, and patients. Clinically grounded and accessible for both newly diagnosed patients and providers.
Best for: Patients, family members, and providers new to hypermobility conditions
Hosted by Kerry, an attorney and hypermobility patient advocate. Features world-renowned physicians, advocacy experts, and patients living with hypermobility conditions. Covers treatment options, the doctor-patient relationship, and topics relevant to the hEDS and HSD community.
Best for: Patients and advocates interested in the clinical and systemic dimensions of hypermobility
A well-regarded UK patient organization offering clear, clinically accurate information about POTS and related conditions. Their educational explainers on autonomic dysfunction, symptom management, and treatment approaches are useful for patients and providers regardless of location.
Best for: Patients and providers seeking clear clinical overviews of POTS
Critical information for ER providers treating patients with hEDS, POTS, and MCAS — medication sensitivities, crisis protocols.
Notify MeFor cardiologists and electrophysiologists — POTS-specific diagnosis, tilt table testing, treatment protocols including ivabradine and fludrocortisone.
Notify MeFor neurologists — autonomic dysfunction, small fiber neuropathy, and neurological presentations specific to POTS.
Notify MeFor allergists and immunologists — MCAS-specific mediator testing, trigger identification, H1/H2 antihistamine protocols, and mast cell treatment planning.
Notify MeFor gastroenterologists — GI manifestations of MCAS, histamine intolerance, food triggers, and distinguishing MCAS from other GI conditions.
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