Jackson TN EDS Links of Interest

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***** Reference Materials: ****

SOCIETIES/ ORGANIZATIONS:

The Ehlers Danlos Society (previously National Foundation – now an international Society)
http://www.ehlers-danlos.com

Ehlers-Danlos Support UK
http://ehlers-danlos.org/

EDS Awareness
https://www.chronicpainpartners.com/

EDS Wellness
http://edswellness.org/

Ehlers-Danlos Network
http://www.ehlersdanlosnetwork.org

EDSers United
https://www.edsers.com/

Center for Ehlers-Danlos Syndrome Alliance
http://www.CEDSA.org

Hypermobility.org
http://hypermobility.org/

Inspire is for People with Rare Diseases to  Find and Communicate
https://www.inspire.com/

Mastocytosis Society
http://tmsforacure.org/patients/mastocytosis_explained_6.php

Dysautonomia International
http://www.dysautonomiainternational.org/

A fairly new charity that started 2016. They provide small amounts of financial assistance to people with Chiari and related disorders, which include EDS. They have a detailed accountment of deposits and payments. 90% of what they take in is stated to be for aid, the rest is for charity expenses. No one working for the charity gets paid. They have quite a few fundraisers, which does include Amazon Smile, something that the Ehlers Danlos Society (formerly EDNF) does.
http://www.chiarifund.org

 

BASICS:

NEW 2017 American Journal EDS Publication from an International Consortium of EDS Experts
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.1/issuetoc

Ehlers Danlos Info
http://ehlers-danlos.com/ehlers-danlos-info/

Patient Support
http://ehlers-danlos.com/patient-support/

MINIMUM Info for Medical Professionals
http://ehlers-danlos.com/medical-professionals/

MYTHS AND FACTS
http://www.ehlersdanlosnetwork.org/myths-facts.html

 

GREAT SUMMARY PAGES/ OVERVIEWS:

** NEW DIAGNOSTIC CRITERIA AS OF 3/15/2017***
https://ehlers-danlos.com/eds-diagnostics/

Description from National Organization for Rare Diseases
https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/

EDS factsheet
https://m.facebook.com/groups/152615741473177?view=permalink&id=1208044112596996

EDS signs and symptoms
https://m.facebook.com/groups/152615741473177?view=permalink&id=1208045332596874

Beighton & Brighton Scales (also available in Group Photo album – Resources)
http://edswellness.org/…/the-beighton-score-for-hypermobil…/

EDS DIAGNOSTIC CHECKLIST/STAGES OF LIFE
http://ehlers-danlos.com/wp-content/uploads/EDSinPracticeS.pdf

EDS resources, intro and articles compiled
http://spoonsandstripes.tumblr.com/…/what-is-ehlers-danlos-…

 

VIDEOS/PRESENTATIONS:

Extreme EDS Classical Type Symptoms
https://wn.com/ehlers%E2%80%93danlos_syndrome

Fantastic Webinars by EDS Specialists
https://www.chronicpainpartners.com/webinars/

Plenty of great presentations by EDS Specialists! Many cutting edge and prior to publication
http://ehlers-danlos.com/past-events/

 

EDS AND PAIN:

HIGHLY COMORBID CONDITIONS:

Great compilation mostly on hEDS & comorbidities (with a lot of symptom overlap)
http://www.ohtwist.com

TIPS:

Tips for EDSers
http://spoonsandstripes.tumblr.com/…/spoonsandstripes-image…

31 random (general) EDS “facts”
https://www.buzzfeed.com/…/31-random-facts-about-ehlers-dan…

 

REFERENCES:

Clinical Utility Gene Card Update (Official minimum diagnostic criteria and confirmed “known” mutations
http://www.nature.com/…/journ…/v21/n1/full/ejhg2012162a.html

 

*****FACEBOOK GROUPS (Alphabetical order):******

Cannabis & Ehlers Danlos Syndrome (Info & Discussion)
https://www.facebook.com/groups/677786868979711/

Celebrities with Invisible Illnesses – a group for speculating which Celebrities may have connective tissue disorders etc
https://www.facebook.com/groups/1695551190657872

Chronic Gamers
https://www.facebook.com/groups/1316854705053622/

Chronic Illness Sell & Trade
https://www.facebook.com/groups/1139420839510049/

Chronic Pain Support Group
https://www.facebook.com/groups/11864244228/

Complementary and Alternative Medicine for Ehlers-Danlos Syndrome
https://www.facebook.com/groups/725920100776897/

Cusack Protocol (has been known to bring some relief to people with EDS, Ms Cusack doesn’t receive financial gain, however please consult your physicians)
https://www.facebook.com/groups/edsandaloe/

Ehlers-Danlos Christian Support Group
https://www.facebook.com/groups/712856975474671/

Ehlers Danlos Christian Safe Haven – Women Only
https://www.facebook.com/groups/669324583124307/

Ehlers Danlos & Pregnancy and more (should I or shouldnt I)
https://www.facebook.com/groups/1454456978189155/

Ehlers Danlos Support: Freely Discuss New Criteria
https://www.facebook.com/groups/266055177174991/

Ehlers Danlos Syndrome and the Military Family
https://www.facebook.com/groups/1261147160646263/

Ehlers-Danlos EDS/POTS/MCAD Support Worldwide
https://www.facebook.com/groups/598876153485778/

Ehlers-Danlos Syndrome (EDS) Medical Scientific Articles
https://www.facebook.com/groups/200753810005631/

Ehlers-Danlos Support Worldwide EDS/POTS/MCAD/Chiari
https://www.facebook.com/groups/598876153485778/

Ehlers-Danlos Syndrome Closed Group (For those Diagnosed)
https://www.facebook.com/groups/EhlersDanlosSyndromeClosed/

Ehlers-Danlos Syndrome Public Group (For those Not Diagnosed)
https://www.facebook.com/groups/1417037428584481/permalink/1417046915250199/

Ehlers-Danlos Syndrome Pregnancy Support and Info
https://www.facebook.com/groups/1726035151050108/

Ehlers Danlos Syndrome – Support & Discuss
https://www.facebook.com/groups/1559755797383062/

Ehlers Danlos SSD/SSDI support
https://www.facebook.com/groups/eds.ssdi.support/

EDS Australia & NZ Supporting EDS/POTS/ME/CFS/Fibro/MCAD/Chiari/ASD
https://www.facebook.com/groups/979304358808822

EDS C.A.S.T. (Caregiver and Support Team)
https://www.facebook.com/groups/1938834516345790/

EDS life hacks (READ THE PINNED POST)
https://www.facebook.com/groups/edslifehacks/

EDS/ME/CFS/FM/POTS/MCAD/GP Chiari articles and info
https://www.facebook.com/groups/588817404473821

EDS UK Men’s Support Group
https://www.facebook.com/groups/EDSUKmens/

Dysautonomia Support Group
https://www.facebook.com/groups/DysautonomiaSOS/

Friends With Vascular Ehlers-Danlos Syndrome
https://www.facebook.com/groups/127729143983649/

FODMAPS and Fructose friendly recipies
https://www.facebook.com/groups/FODMAPfriendlyrecipes/

Holistic Approaches to EDS
https://www.facebook.com/groups/313568438983778

HMS & EDS Support UK
https://www.facebook.com/groups/1408104205901644/

Gastroparesis Support Group
https://www.facebook.com/groups/GastroparesisSupportGroup/

Good North American Doctors for EDS pots hashis RA etc etc
https://www.facebook.com/groups/1438285386415297/

Good Australian Doctors for EDS pots hashis RA etc etc
https://www.facebook.com/groups/287952358017187/

Good European Doctors for EDS pots hashis RA etc etc
https://m.facebook.com/groups/372374862916395

Group for Parents of EDS & Hypermobility children
https://www.facebook.com/groups/290204814360045/

IV Intravenous access, PORTS and PICCS for POTS, EDS, ME/cfs and FM
https://www.facebook.com/groups/1502494416657717/?ref=br_tf

Lipedema & KETO Way of Eating
https://www.facebook.com/groups/LipedemaKetoWOE/

Lipedema FasciaBlasters
https://www.facebook.com/groups/LipedemaFasciaBlasters/

Lipedema Liberated
https://www.facebook.com/groups/lipedemaliberated/

Lipedema Sisters, USA
https://www.facebook.com/groups/lipedemasistersusa/

LGBTQ Ehlers-Danlos!
https://www.facebook.com/groups/896875303721003/

Life with Ehlers Danlos Syndrome – A smaller group which allows for off topic posts – https://www.facebook.com/groups/102793226741244

Lovely Lipedema Life
https://www.facebook.com/groups/1809280765764148/

Loving Life With Stage 1/2 Lipedema
https://www.facebook.com/groups/StageOneTwoLipedema/?ref=br_rs&qsefr=1

Mast Movement
https://www.facebook.com/groups/MastMovement/

MCAD and related disorders
https://www.facebook.com/groups/207077049364043/

Men with Ehlers-Danlos Syndrome
https://www.facebook.com/groups/173542636161246/

PORTS/PICC lines etc
https://www.facebook.com/groups/1502494416657717/

POTS
https://www.facebook.com/groups/PosturalOrthostaticTachycardiaSyndrome/

Pregnancy Zebras
https://www.facebook.com/groups/530465153810731/

Rainbow Zebras
https://www.facebook.com/groups/801022803309045/

Stiff Zebras – If you have muscle or joint stiffness as well or instead of hypermobility there is this group
https://www.facebook.com/groups/455374384560623/

Upright MRI Open MRI worldwide locations
https://www.facebook.com/groups/683158415164329/

vascular ehlers danlos syndrome uk
https://www.facebook.com/groups/519995778143653/

Wheelchair Users Keep Rolling On
https://www.facebook.com/groups/WheelchairUsersKeepRollingOn/

Zebra Politics
https://www.facebook.com/groups/187597718312207/

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