At some point I am planning to populate this area of my website with some informational resources of my own making, but in the meantime, I thought I would try and put together as comprehensive a collection of external resources as I can, to make it so that anyone who visits the site can easily access as much good quality information on clinical hypermobility and connective tissue disorder as possible.
A lot of the below organisations are based in the UK, as these are the organisations I know of. If you live outside of the UK and know of any other useful orgs that could be added to this list, let me know via my Contact form.
HSD/hEDS
Organisations for HSD/hEDS:
Online Resources
- EDS GP Toolkit
- Spider Tool site
- Revised Ghent Criteria
- SCREEND’EM
- SpondyloArthritis Diagnosis Evaluation (SPADE) Tool
Printable Resources
- 2017 EDS Criteria
- [[LLAS.pdf]] (Lower Limb Assessment Score, Protocol/Scoring Sheet)
- [[ULHAT.pdf]](Upper Limb Hypermobility Assessment Tool, Protocol/Scoring Sheet)
- [[Spider Tool PDF.pdf]]
hEDS/HSD in Research
Below is a list of key academics in different areas of research surrounding hEDS/HSD, and their ResearchGate profiles. If you want to dive into the wider evidence base, these people’s publications are a great starting point
- Dr. Rodney Grahame
- Dr. Grahame is one of the
- Dr. Alan Hakim
- Dr. Hakim
- Dr. Clair Francomano
- Dr. Francomano
- Dr Marco Castori
- To my knowledge,
- Dr Andrea Celletti
- To my knowledge,
- Dr. Jessica Eccles
- To my knowledge, Dr. Eccles is the biggest name in research looking into the associations between hypermobility and neurodivergence; particularly in terms of autism and ADHD.
(P.S. Any important names missing from this list are due to my own ignorance, not due to an evaluation that any missing individuals are not important/expert enough to make the list! If I have missed anyone particularly significant to the development of our current understanding of hEDS/HSD, send me a message on my contact page and let me know.)
Content Creators
Below is a list of other healthcare professionals who make content online on hypermobility/HDCT-related topics, that you may wish to check out!
- Dr. Clair Francomano
- In addition to being a key driver of the formal evidence base on hEDS/HSD, Dr. Francomano is also very active in producing educational content online, and I’d recommend checking out her YouTube channel before anything else in this list!
- Jen Crane, DPT (Cirque Physio)
- Dr. Linda Bluestein (HypermobilityMD; Bendy Bodies Podcast)
- Cortney Gensemer, PhD (CortDoesScience)
- Corinne McLees (Hand Coach Corinne)
- Emily Rich, OT
- Jeannie di Bon (Zebra Club)
(P.S. I am not much active on social media so if anyone in this list is not as active anymore, or if other big names have come up recently that aren’t on the list, I won’t know about them. In that case, shoot me a message on my contact page and let me know about them!)
Rarer HDCTs
The rarer heritable disorders of connective tissue (HDCTs) are admittedly an area that I am less well versed in, but it’s an area of considerable active research for me. As my expertise grows here, this section will expand but for now I will just provide links to the main organisations I am aware of for vascular EDS, Marfan’s Syndrome, Loeys-Dietz Syndrome, and Osteogenesis Imperfecta, specifically because they are explicitly mentioned in the 2017 hEDS Diagnostic Criteria as conditions that must be ruled out for the purpose of diagnosis.
Organisations for rarer HDCTs
- Marfan Foundation (For Marfans, LDS, vEDS and all other genetic aortic/vascular conditions; below are sub-websites of this main org)
- Marfan Trust (UK Based; for Marfans and Loeys-Dietz specifically)
- OIF (Osteogenesis Imperfecta org in USA)
- Brittle Bone Society (Osteogenesis Imperfecta org in UK)
Key Resource for ‘Red Flag’ Screening of Rarer HDCTs
This is an excerpt from the book “Symptomatic : The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders” by Dr. Francomano and Dr Hakim.
It is a table of the key identifiable clinical features or ‘red flags’ that may raise suspicion of a rarer HDCT. You may find this useful in screening or assessments of patients:
Common Comorbidities of HSD/hEDS
Organisations for Common Comorbdities of HSD/hEDS
- PoTS UK
- The Dysautonomia Project
- Pelvic Organ Prolapse Support
- Craniocervical Instability Foundation
- IACFSME.org
- This is the International Association for Chronic Fatigue/Myalgic Encephalomyelitis
- Mast Cell Action
- In addition, since quality info on MCAS is generally more scarce than the above, the two below bullet points are recommendations for other sources to look into, sent to me by a close contact of mine who runs a small support group for MCAS:
- Dr. Lawrence Afrin is a key researcher in the area of MCAS, so his research publications would be a good place to start for those interested in the evidence base on it.
- MastAttack.org is a blog written by a molecular biologist with systemic mastocytosis, has a ‘Provider Primer Series’ for clinicians rich with citations to published research.
- In addition, since quality info on MCAS is generally more scarce than the above, the two below bullet points are recommendations for other sources to look into, sent to me by a close contact of mine who runs a small support group for MCAS:
- UK FND Network
- This is an extensive list of different clinician and patient facing sites, organisations and groups focused around Functional Neurological Disorders.