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.

Balham

Kelly McKinstry

KEMcKinstry33@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.

Central London

Marini Walker

wooten@protonmail.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.

Dagenham

Kelly Casbolt

kellycasbolt@hotmail.com

Hi I’m Kelly.

I am a 34 year old stay at home Mum. Myself and my eldest both suffer with Hypermobile EDS, so I know how it can affect family life. In my spare time I enjoy live music and comedy, I live to laugh and find the fun in most things – especially living with EDS. In my past life I was a pub manager, and am always first on the dancefloor (even if I regret it later!)

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.

Hayes

Shereen Hope Fares

shereenhopefares@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.

North London

Anne Lavery

admlavery@gmail.com

I have Hypermobile EDS. My working life has included being a journalist and a teacher, but a few years ago the condition became too disabling and I took medical retirement. Now I concentrate on voluntary projects and I’m really pleased to be the Area Coordinator for North London.

The North London area support group comprises a broad swathe of London north of the river, from Uxbridge in the West to Ilford in the East. My aim is to continue creating a wonderful active support network across the area. Meetings are friendly and relaxed, where people can get to know their peers, swap tips and experiences. In addition I hope that by working together we can raise awareness and funds to support EDS.

I am always contactable via phone, email or through our local Facebook page, please don’t get hesitate to get in touch if you’d like to discuss something or if you just need a sympathetic ear.

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.

Wimbledon

Karen Haggerty

karenhaggerty@me.com

Karen Haggerty.

I was born in London but have lived in Germany, Portugal and India. I’m a writer and a clinical hypnotherapist and have worked closely with schools, orphanages and tribes in other countries, building sponsorship programs for victims of child labour and street children.

I was diagnosed with  hEDS in 2016 but I have a strong crossover with cEDS.

I have 5 children, two of whom are adopted from India. I like to look at things positively and find humour and light in sometimes very dark situations. I’m really keen to get a support group up and running in Wimbledon and look forward to meeting more carers and others with EDS near me.

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.

More Support

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