Ehlers-Danlos Syndrome Awareness
There are many members and supporters of FibroFlutters who have Ehlers-Danlos Syndrome (EDS), or Hypermobility Spectrum Disorders (HSDs). Including myself and fellow co-founder Vicky Green who has been officially diagnosed with Hypermobility Type EDS (hEDS). Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders is part of our advocacy.
In our earlier days as a community support group our knowledge of this rare genetic condition was very limited. Over time as our understanding of it grew so did our advocacy efforts as a patient group.
We are supporters of EDS Support UK and ask you to please join us to help them raise awareness.
You can do this during our May-long awareness campaigning, and via the many fundraising efforts that are happening within the UK. We do ask though that awareness campaigning can occur all year long. It is not restricted to the month of May which is a recognised global date for EDS.
Looking for a local support group then please sign up for a basic membership to become a member, it’s free and you get access to their magazine ‘Fragile Links’.
You can check if there is a group near you via this link: Support Groups
There are also other differing levels of paid membership that you can check out via this link: Membership Levels
Please support The Ehlers-Danlos Support UK
If you need some support yourself then please contact EDS Support UK via their free telephone service and email HELPLINE
Many thanks for supporting the work that the charity The Ehlers-Danlos Support UK does towards raising awareness through educating people about what Ehlers-Danlos Syndrome and Hypermobility Spectrums Disorders are. Also, through the many support groups that the charity has throughout the UK that all support patients with Ehlers-Danlos Syndrome and Hypermobility Spectrums Disorders.
The Ehlers-Danlos Support UK is a Charity registered in England and Wales (1157027) and Scotland (SC046712)
Registered Company No. 8924646.
Registered Address: Devonshire House, Manor Way, Borehamwood, Hertfordshire WD6 1QQ
FibroFlutters supporting The Ehlers-Danlos Support UK
Huge thank you to everyone that shows us their support it is truly appreciated.
COVID-19
Please keep safe, remember to socially distance yourself even with a lessening of the lockdown we should be still keep prevention at the forefront of our minds. Remember to wash your hands often for 20 seconds and to wear a mask if you are going out and about.
Wishing you all wellness and less pain
Carole and the team
#showyourstripes #shareyourrare #strutyourstripes
Includes other places around the #globe for #ehlersdanlossyndrome #hypermobilityspectrumdisorders #healthinformation and #resources
#raisingawarenesstogether
#raredisease
#chronicillness #chronicpain #hypermobility #collagendisorder #genetics #multiplesystemdisorder
Other places for Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder information and resources:
Got any to add from your country of residence please email me fibroflutters@gmail.com
UK:
The Ehlers-Danlos Syndromes Toolkit – This toolkit has been developed in partnership between the RCGP Clinical Innovation and Research Centre and Ehlers Danlos Support UK led by Emma Reinhold and with contributions from Lisa Jamieson, Lesley Kavi, Kay Julier, Hanadi Kazkaz, Alan Hakim, Nikki Praiba, Gemma Pearce, Philip Bull and Jan Groh.
(HMSA) Hypermobility Syndromes Association What are hypermobility syndromes?
(HMSA) Hypermobility Syndromes Association information regarding children – Kids Zone
Versus Arthritis Joint Hypermobility
America: – THE EHLERS-DANLOS SOCIETY
Ehlers-Danlos Society Support Group & Forum – Inspire
THE EHLERS-DANLOS SOCIETY Global Affiliate Program – AFFILIATES, SUPPORT GROUPS, AND CHARITIES
Genetics Home Reference Ehlers Danlos information – National Institutes of Health
Australia:
Arthritis Australia – Hypermobility syndromes (children)
Health Direct – Ehlers-Danlos information (Gov funded)
AUSTRALIA EDS support groups and charities listed on the THE EHLERS-DANLOS SOCIETY Global Affiliate Program
Genetic and Rare Disease Network (GaRDN) Western Australian non profit
Canada:
Canadian Ehlers-Danlos Foundation
Canadian support groups and charities listed on the THE EHLERS-DANLOS SOCIETY Global Affiliate Program
Europe:
7 ways to find information on your rare disease – EURORDIS a non-governmental patient-driven alliance of patient organisations representing 917 rare disease patient organisations in 72 countries
Flemish and Belgian Links – listed on the THE EHLERS-DANLOS SOCIETY Global Affiliate Program
Rare Connect Ehlers-Danlos Community (official)
The Swedish Ehlers-Danlos Syndrome Association – listed on the Nordic Trial Alliance for Scandinavian links
Rare diseases Sweden – listed on the Nordic Trial Alliance for Scandinavian links | Ehlers-Danlos National Association community on Facebook
The Norwegian Ehlers-Danlos Syndrome Association – listed on the Nordic Trial Alliance for Scandinavian links
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