Support Groups

Did you know...all our support groups are run by Area Coordinators who volunteer their time to organise meetings all over the country. Our Area Coordinators are from all walks of life including some who suffer with EDS, to those who care for someone with it. Without our volunteers, the support we provide to you would cease to exist, so we are incredibly grateful for the invaluable work they do.

We have over 50 groups online and face to face, with the aim to provide safe, friendly environments where members can meet others, listen to people’s stories and learn from each other. All of our support groups also have a closed regional Facebook group for members only.

We are very grateful for a Big Lottery Fund grant through the National Lottery which helps pay for the meetings, training of our volunteers and much more.

Please note that Volunteer Area Coordinators may not get back to you immediately.

If you need to talk right now, whatever you’re going through, there are people you can talk to any time. You can:

call Samaritans on 116 123 (UK-wide)
text SHOUT to 85258 (UK-wide)
call C.A.L.L. on 0800 132 737 (Wales only)

These services are for anyone who’s struggling. They won’t judge you.

They’re free, they’re anonymous, and they’re always open.

Cambridge

Vacant

Contact group

There is currently a volunteer vacancy for this area. Please contact kirsty@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support. Our East of England group run regular regional meetings that members are welcome to join. Visit us here to look at upcoming dates.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Colchester

Vacant

Contact group

There is currently a volunteer vacancy for this area. Please contact kirsty@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support. Our East of England group run regular regional meetings that members are welcome to join. Visit us here to look at upcoming dates.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Essex

Vacant

Contact group

There is currently a volunteer vacancy for this area. Please contact kirsty@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support. Our East of England group run regular regional meetings that members are welcome to join. Visit us here to look at upcoming dates.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Ipswich

Grainne

Contact group

So here are a few details about myself

My name is Grainne I am 51.

I am a full time mum to my daughter Xanthia 21 and my son Daniel 24.

My daughter has EDS-HT ( HEDS ) Diagnosed by Professor Rodney’s Grahame she also has a diagnosis of FND/FMD ( functional neurological movement disorder),Chronic pain , anxiety, migraine, Irlen Syndrome, fatigue and has learning difficulties and uses a powered wheelchair when out to help with pacing and walking distance she is currently studying hair and beauty at Suffolk new college in Ipswich.

My son has a diagnosis of BJHMS (Heds) given locally by hospital rheumatologist his symptoms are  Fatigue, pain, migraine, anxiety, legs that can give out when they are weak and fatigued with him collapsing he is also a powered wheelchair user to help with pacing and walking distance he is currently at Essex university studying modern history and criminology.

So I have had to deal with many aspects of EDS and its other associated symptoms.

So it would be very exciting for me to be able to now use my knowledge and skills that I have found with supporting my children with helping others who find themselves in the same position something I have been doing on social media for some years now.

I look forward to hearing from you all soon as to how I can support you all.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group

Kings Lynn

Vacant

Contact group

There is currently a volunteer vacancy for this area. Please contact kirsty@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support. Our East of England group run regular regional meetings that members are welcome to join. Visit us here to look at upcoming dates.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Norwich

Vacant

Contact group

There is currently a volunteer vacancy for this area. Please contact kirsty@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support. Our East of England group run regular regional meetings that members are welcome to join. Visit us here to look at upcoming dates.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Peterborough

Hi, I’m Penny and a mother of 2 children. I am engaged to Jamie and we live in Peterborough. I was diagnosed with hEDS with features of the vascular type when I was 24. My daughter is 11 and also diagnosed with hEDS, my son is 10 and diagnosed with HS.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

More Support

Support groups, advice with work, help with benefits and more