Resources

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Information, Groups, & Resources

While we are not a medical organization and we can’t give medical advice, we believe in sharing resources and information from around the connective tissue disorder community. We are not affiliated with any of the listed organizations or resources. Click on the links below to be taken to information regarding each condition. And note: if you’re experiencing a medical emergency, we don’t have any resources for emergency care– please dial 911.

Scroll a bit further to find groups sorted by categories like Conditions, Locations, and Age Groups. emergency

We’ll also add conditions from time to time, so check back! This list was compiled over many years & is the work of many hands… and it is free to distribute across the Connective Tissue community. If you have a resource to add, feel free to email pilar@laughingpebblestudio.com

Conditions

The National Institutes of Health new site, the Genetic and Rare Disease Information Center and PubMed articles offer key information about each connective tissue disorder, plus resources that include current research and support.

Marfan Syndrome

Hereditary Ataxia

Ehlers-Danlos Syndrome

Stickler Syndrome

Loeys-Dietz

Turner Syndrome

The family of Genetic Connective Tissue Disorders is vast, if rare. (And some conditions are not as rare as they were initially believed to be!) Marfan, Ehlers-Danlos, and Loeys-Dietz are perhaps the most well known CTDs. Yet our syndromes include conditions like Hereditary Ataxia, a neurological condition; Stickler Syndrome, a heart condition; and Turner Syndrome, a developmental disorder. Don’t see your CTD listed? Have it added to our list!

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Resources

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 Jon Rodis & Kathleen Kane, Esq. presentation slides from 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, help improve medical products and services.

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)

Empowerment:

Webinars, Podcasts, Zines:

Ascending Aortic Repair

Bobby Jones Foundation video library (CCI, syring, 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.

Connective Tissue Coalition – great resources & initiatives

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:

GEMS S 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