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.

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.

Suffolk

Grainne Watts

suffolkeds@outlook.com

Date: December 9, 2017

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: November 25, 2017

Start: 2:00 pm

Finish: 4:00 pm

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

Additional info: Ali would like to make this meeting child and family friendly. To do so, she needs some idea of ages that will be attending to provide appropriate activities for children so that adults can also talk. Please get in touch with Ali if you are interested in attending this event.

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Date: April 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: 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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