May is Ehlers-Danlos Syndrome Awareness Month


There are many members and supporters of FibroFlutters who have Ehlers-Danlos Syndrome, or Hypermobility Spectrum Disorders including myself and fellow co-founder Vicky Green who has been officially diagnosed with hEDS.

In our earlier days as a community support group our knowledge of this rare genetic condition was very limited and 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 during our May-long awareness campaigning and the many fundraising efforts that are happening within the UK.

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

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.

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.

NHS – Ehlers-Danlos Syndromes

(HMSA) Hypermobility Syndromes Association What are hypermobility syndromes?

(HMSA) Hypermobility Syndromes Association information regarding children – Kids Zone

Patient

Versus Arthritis Joint Hypermobility

America: – THE EHLERS-DANLOS SOCIETY

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

Ehlers-Danlos Syndrome Canada

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


Campaign postcard from 2016

FibroFlutters fancy logo
Fancy Logo © FibroFlutters


FIBROFLUTTERS CHRONIC*INVISIBLE*RARE ILLNESS SUPPORT

Patient * Health * Research * Pharma * Advocacy


Locally we’re a Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK … 
… but we also offer online support, advice and advocacy via our social media network , chronic illness portal, across the globe.

FibroFlutters via Fluffmeister Campaign Arts Campaigning and advocating to raise awareness for HMSA & EDS UK.
ME / CFS Awareness poster for May 12th 2017

Please can you read our ‘Disclaimer’ & ‘Privacy’ notes
and if you have a problem we are always open to discussion, just e-mail Carole


PLEASE NOTE: We are not medical professionals, but as patients we are sharing news, articles, information and resources out to you as all stakeholders to help keep you up to date within the Medical healthcare industries and chronic illness health, rare disease and our advocacy work for patients, health, research and pharma, including digital and AI in medicine.


PLEASE NOTE: THAT THIS SITE USES GOOGLE ANALYTICS TO COLLECT DEMOGRAPHIC INFORMATION FOR INFORMATION AND CONTENT DECISION MAKING PURPOSES ONLY AND NOT TO SELL TO 3RD PARTIES.


MANY THANKS in advance for your understanding –
from the administrator – fibrofly73 aka Carole



See our About Us pages




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Mental health issues are often a concern so we like to support raising awareness for that too!

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