Helpful Links

Helplines:

• CTC Email Support

• EDS Society Helpline

• The Marfan Foundation: Help Center

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Daily Living:

• Applying for SSDI disability? This comprehensive report on CTDs(2022) was compiled at the request of the SSA. It is “groundbreaking” and an invaluable resource for you! -via Jon Rodis

• Applying for Disability ​Webinar  Jon Rodis & Kathleen Kane, Esq. April 28, 2021, for the Metro DC EDS and HSD Support Group

• Applying for Disability Jon Rodis & Kathleen Kane, Esq. presentation slides from the 2017 New York Institute of Technology College of Osteopathic Medicine Symposium

• How To Get On – “How to have a great disabled life.” A treasure trove of guides for financial survival, health care, housing… you name it, it’s here, in a beautiful, inspiring presentation!

• Accessible Travel

• Viscardi Center: a program to help people with disabilities become entrepreneurs

• ABLE accounts: tax-advantaged savings accounts that can fund disability expenses.

• Find Help. org help finding financial assistance, food pantries, medical care, and other free or reduced-cost assistance

• Rare Patient Voice: Get paid for your opinion, and help improve medical products and services.

• Insurance: 6 Strategies to Navigate Your Insurance Provider’s Approvals Process 

 

Organizations:

• CEDSA: Center for Ehlers Danlos Syndrome Alliance Inc.

• Dysautonomia International

• Dysautonomia Support Network

• The Ehlers-Danlos Society

• GADA Canada: Genetic Aortic Disorders Association

• The HMSA: The Hypermobility Syndromes Association (London, England)

• Hyp-ACCESS

• The Marfan Foundation

• Marfan Trust (Bromley, Enland)

• Association of Gastrointestinal Motility Disorder 

• Bobby Jones CSF   

• Chronic Pain Partners

• GADA-Genetic Aortic Dissection Association

• HYP-Access

• Rare Disease Legislative Advocates-EveryLife Foundation 

• Pathways to Trust

• TCAPP

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Webinars and Podcasts:

• Ascending Aortic Repair

• Bobby Jones Foundation video library (CCI, syringomyelia, Chiari, etc)

• Chronic Pain Partners – a wonderfully exhaustive collection of videos, articles, links, and webinars by some of the top medical professionals caring for CTD patients.

• Dysautonomia Support Network Webinars and YouTube Channel

• Dysautonomia Support Network Dyscovery Education

• Ehlers-Danlos News

• Ehlers Danlos Society Loose Connections eMagazine

• Ehlers Danlos Society Videos

• GADA Canada: Aortic Dissection

• Great Plains Laboratory Inc.

• Hypermobility Happy Hour podcast

• Hypermobility Specialist Blog

• The Marfan Foundations- Marfan Syndrome and Related Conditions Empowerment Series of Webinars

• Marfan Foundation Virtual Medical Symposium Series

• NORD rare disease resources

 

For Children and Schools:

• GEMSS for Schools

• Dr. Pocinki’s Hypermobility pdf includes a list of actions to avoid- very helpful when building accommodations for IEP/504

• IEP/504 school accommodations help: (USA)EDS Society 2016 Educator’s Guide and Parent Guide courtesy of EDS Wellness; (Great Britain) Toolkit via HMSA

 

Medical Resources:

• Differences in manifestations of Marfan syndrome, Ehlers-Danlos syndrome, and Loeys-Dietz syndrome

• Alan Spanos, MD offers a collection of printable articles to “help people with hypermobility get better medical care.”

• ER: Things ER Staff Should Know About People With Rare Diseases

• 14 Ways to Describe What a Subluxation Feels Like

• Awakening Others About the Challenges of Having a Disability by Jon Rodis

• Food Allergy: Allergence

• Medical Flights: PalsSkyHope and Angel Flight

• Where is My Medical Record?

• Pharma: About Mark Cuban’s CostPlus pharmacy

• MedWatch: report observed or suspected adverse events for human medical products

• Research sources:

• EDS & Chronic Pain News & Info: research digest

• Ehlers Danlos Initiatives, Surveys, and Unified Voices 2016 survey

• Medical/Scientific Articles – a Facebook group listing EDS medical studies & research articles written by medical professionals. Cited & referenced.

• Surgery: Prepping for peri-operative success Perioperative nurse and Dysautonomia Support Network  Amanda Aikulola LPN gives a great how-to presentation on preparing for surgery.

• Alan Spanos, MD’s Surgical and Anesthetic Precautions for hEDS/HSD

• Dr. Linda Bluestein’s Anesthesia & Surgery Alerts for EDS Syndromes and related disorders