Daily Living Resources
Apply for Disability
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Consensus Study Report: ​Selected Heritable Disorders of Connective Tissue and Disability (2022)
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"Disability in EDS"by Dr. Pradeep Chopra 2025
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Applying for Disability Jon Rodis & Kathleen Kane, Esq. presentation slides from the 2017 New York Institute of Technology College of Osteopathic Medicine Symposium
Applying for Disability
Applying for Disability
Dysautonomia Support Network Webinar: Applying for Disability
Applying for Disability - Jon Rodis & Kathleen Kane, Esq.
2016 NAF AAC - Disability Decisions and Applying for SSDI
School Accomodations
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"School accomodations for students with EDS"by Dr. Pradeep Chopra (2025).
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Dr. Pocinki’s Hypermobility pdf includes a list of actions to avoid- very helpful when building accommodations for IEP/504
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IEP/504 school accommodations help: (USA)EDS Society 2016 Educator’s Guide and Parent Guide courtesy of EDS Wellness; (Great Britain) Toolkit via HMSA
Living with a Disability
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Viscardi Center: a program to help people with disabilities become entrepreneurs
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ABLE accounts: tax-advantaged savings accounts that can fund disability expenses.
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Find Help.org help finding financial assistance, food pantries, medical care, and other free or reduced-cost assistance
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Rare Patient Voice: Get paid for your opinion, and help improve medical products and services.
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Insurance: 6 Strategies to Navigate Your Insurance Provider’s Approvals Process
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Awakening Others About the Challenges of Having a Disability by Jon Rodis
Webinars & Podcasts
- Ascending Aortic Repair
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Bobby Jones Foundation video library (CCI, syringomyelia, Chiari, etc)
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Chronic Pain Partners – a wonderfully exhaustive collection of videos, articles, links, and webinars by some of the top medical professionals caring for CTD patients.
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The Marfan Foundations- Marfan Syndrome and Related Conditions Empowerment Series of Webinars
More Resources
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​Alan Spanos, MD offers a collection of printable articles to “help people with hypermobility get better medical care.”
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The Center for Complex Conditions: Learning Resources from Dr. Pradeep Chopra
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Dysautonomia/POTS
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Endometriosis
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ER: Things ER Staff Should Know About People With Rare Diseases
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Food Allergy
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MCAS
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Mast Cell Disease Society. Provider Directory
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The Mast Cell Disease Society (TMS)
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Mast Cell Action
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Mast Cell Aware
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ME/CFS
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Medical Flights:
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Pharma:
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​About Mark Cuban’s CostPlus pharmacy
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MedWatch: report observed or suspected adverse events for human medical products
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Research sources:
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EDS & Chronic Pain News & Info: research digest
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Ehlers Danlos Initiatives, Surveys, and Unified Voices 2016 survey
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Medical/Scientific Articles – a Facebook group listing EDS medical studies & research articles written by medical professionals. Cited & referenced.
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Service Dogs
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Surgery Resources:
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​Prepping for peri-operative success Perioperative nurse and Dysautonomia Support Network Amanda Aikulola LPN gives a great how-to presentation on preparing for surgery.
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Dr. Linda Bluestein’s Anesthesia & Surgery Alerts for EDS Syndromes and related disorders
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Organizations
The information on this website is for general educational purposes only and is not medical advice, diagnosis, or treatment. It is also not intended to serve as legal advice or replace professional legal counsel. We do our best to keep information accurate and up to date, but science and medicine change quickly and the content here may not reflect the latest guidance or apply to every individual. Please do not rely on this site to make medical or legal decisions. References or links to external resources, organizations, products, or services are provided for informational purposes only and do not constitute endorsement or recommendation.