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, 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.

Clacton-on-Sea (volunteer needed)

We are currently looking for a volunteer Area Coordinator to run support groups in this area. If you are interested in joining please click here to find our more about the role.

There are currently no meetings in the diary for this support group. If you have selected to receive notifications on this support group we will notify you when one is organised. You can update what Support Groups you are notified about in your member profile.

Heybridge

Katie Hiskett

katiehiskett@gmail.com

There are currently no meetings in the diary for this support group. If you have selected to receive notifications on this support group we will notify you when one is organised. You can update what Support Groups you are notified about in your member profile.

Peterborough(volunteer needed)

We are currently looking for a volunteer Area Coordinator to run support groups in this area. If you are interested in joining please click here to find our more about the role.

There are currently no meetings in the diary for this support group. If you have selected to receive notifications on this support group we will notify you when one is organised. You can update what Support Groups you are notified about in your member profile.

Southend-on-Sea

Juliet Cumberland

julietcumberland@icloud.com

Hi I’m Juliet, I’m 22 and I live in Rochford, Essex. I’m pleased to be starting a new support group in Southend-on-sea. I was diagnosed with hypermobile EDS in 2015 after a few years of severe symptoms. I love trying to stay active within the limits of EDS and started weight training a year ago. 

 

I hope everyone in the area can come along to the meetings, if you would like to contact me please do so on the email above. 

There are currently no meetings in the diary for this support group. If you have selected to receive notifications on this support group we will notify you when one is organised. You can update what Support Groups you are notified about in your member profile.

Suffolk

Grainne Watts

suffolkeds@outlook.com

Date: February 24, 2018

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

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Date: March 24, 2018

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

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Date: April 21, 2018

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

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Date: May 19, 2018

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

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Date: June 23, 2018

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

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Swaffham

Hello I’m Ali.

Born and bred in Norfolk, I am 30 years old and was finally diagnosed with Vascular EDS at the age of 21, after a severe knee injury.

After 11 years of speech therapy, I still have some language difficulties, and especially since spending five months in ICU this has really knocked me back. Since then however, I’m really fighting back.

I am fed via pegj tube, have POTS VVS and also have a rare condition where my organs shut down very quickly.

I have a film star cat who was in the media with me for her continuing help in alerting my POTS and preventing my vEDS injuries.

Lunar is a big part of my life, as are my hobbies: knitting, table tennis, gym, swimming, and archery.  Despite all my health problems, I still love life and this is why I wanted to start the role as an Area Coordinator. I’d like to support as many members as possible. If those members can’t get to the group then that support can be via email, phone, text or Facebook.

I am always available to be contacted via any of these methods between 9am–1830 Monday-Friday. Please don’t hesitate to contact me for support.

Date: April 28, 2018

Start: 2:00 pm

Finish: 4:00 pm

Venue: The Green Britain Centre, Turbine Way, Swaffham, Norfolk, PE37 7HT

Additional info: This meeting will include a talk from a local Physio about pain management. Anyone affected in any way by EDS is more than welcome to attend! Over 16s only. **There will be a support dog at this meeting. The dog is a Labrador. Please do not distract him while he is working**

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Date: July 28, 2018

Start: 2:00 pm

Finish: 4:00 pm

Venue: The Green Britain Centre, Turbine Way, Swaffham, Norfolk, PE37 7HT

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Date: September 29, 2018

Start: 2:00 pm

Finish: 4:00 pm

Venue: The Green Britain Centre, Turbine Way, Swaffham, Norfolk, PE37 7HT

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Date: November 24, 2018

Start: 2:00 pm

Finish: 4:00 pm

Venue: The Green Britain Centre, Turbine Way, Swaffham, Norfolk, PE37 7HT

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More Support

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