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. It’s free to become a member 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
Many thanks for supporting the work that the charity The Ehlers-Danlos Support UK does towards raising awareness. They do this 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.
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
#chronicillness #chronicpain #hypermobility #collagendisorder #genetics #multiplesystemdisorder
Check out our Rare Disease Advocacy page via the button below
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 firstname.lastname@example.org
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. It was 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
THE EHLERS-DANLOS SOCIETY Global Affiliate Program – AFFILIATES, SUPPORT GROUPS, AND CHARITIES
Genetics Home Reference Ehlers Danlos information – National Institutes of Health
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
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)
We are a Patient Advocacy Organisation & online social media communications network
FibroFlutters patient, health, clinical research, medical, pharma, digital health & AI advocacy.
Support and advice for people with chronic illnesses and rare disorders. Including, Pigmented Villondular Synovitis (PVNS), Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD’s), Fibromyalgia, Chronic pain disorders, Musculoskeletal conditions, Chronic Fatigue Syndromes / ME, and Mental Health.
We also have a Social media network for connecting multi-stakeholders from across the medical healthcare industries. It also provides us with a network for sharing information such as the latest research, news and events from a cross-section of areas within the medical healthcare industry.
We also have many other groups/pages/profiles across social media that we use to achieve our aims of Patient, Health, Research and Pharma Advocacy. They also give us the ability to provide advice and offer a friendly hand of support across many social media platforms.
SLOGAN: #chronicillnessVOICE for everyone #notjustpatients
- We are not medical professionals nor claim to be. Remember that you should always consult your doctor about any health problems and not solely rely on Dr Google, or on any information that you may read online through 3rd parties.
- That this site uses google analytics to collect demographic information for content decision making purposes only and not to sell to 3rd parties.
Social and useful links
Its A Doddle – Mapping the communities that care
By Mapping UK Charities, Community Projects, Groups & Organisations together we are creating a national resource for use at a local level. Check out our profile via this button below.
SYNAPSE / Patient Focused Medicines Development (PFMD) joined in 2019
Check out our profile to see what initiatives we’re involved in, what the work will involve and how diverse a group of people that we are collaborating with on improving patient engagement within clinical trials. Very different! Very exciting! Very Grateful!
Got something to share then don’t hesitate to get in touch with us. Also if you want to write for me in exchange for publishing privileges let me know via the e-mail link below.
FibroFlutters are continuously…
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
Using a model approach using all the ‘stakeholders’ and a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in!!
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Please can you read our ‘Disclaimer’ & ‘Privacy’ notes. If you have any problems we are always open to discussion, just e-mail Carole
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