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 (South LDN)

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

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.

Date: January 21, 2018

Start: 2:00 pm

Finish: 4:00 pm

Venue: UCL School of Pharmacy, 29-39 Brunswick Square, London, WC1N 1AX

Additional info: This is the first all London meeting EDS UK have ever held! Open to anyone affected by EDS. Obviously there are challenges for some in getting to central London... 1. The meeting is on a Sunday so you can drive in and park. More info: http://maps.camden.gov.uk/parking.aspx?area=WC1N%201AX&UPRN=5083545 (NB spaces can be hard to find at any time though) 2. It’s a stone's throw from Russel Square tube (Piccadilly Line) but also not far from Kings Cross which has step free access. 3. I’ve told the venue that some members, like myself, have trouble walking and they’ve given me a room on the ground floor close to the entrance.

Map:

Dagenham (East LDN)

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 (West LDN)

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.

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.

Date: December 10, 2017

Start: 2:00 pm

Finish: 4:00 pm

Venue: MIND Haringey, Station House, 73C Stapleton Hall Road, London, N4 3QF

Additional info: You are invited to our annual winter social! It’s much like a support group meeting only Anne doesn’t chair it and we just mingle and chat. In the past it has been held in a cafe, but it's getting harder to book in advance with the unknown numbers. So this year we’ll have it in our regular room at Mind. It’s really comfy and you can rest assured there will be some yummy treats :) Travel Info: Nearest Tube - Finsbury Park (Victoria, Piccadilly and mainline). Then take the bus W3 from stop B, approx 4mins, get off at Ossian Road. Nearest Rail Stations - Crouch Hill and Harringay (both 5min walk) Driving - There is usually space to park along Stapleton Hall Road just before the building near the petrol station

Map:

Date: January 21, 2018

Start: 2:00 pm

Finish: 4:00 pm

Venue: UCL School of Pharmacy, 29-39 Brunswick Square, London, WC1N 1AX

Additional info: This is the first all London meeting EDS UK have ever held! Open to anyone affected by EDS. Obviously there are challenges for some in getting to central London... 1. The meeting is on a Sunday so you can drive in and park. More info: http://maps.camden.gov.uk/parking.aspx?area=WC1N%201AX&UPRN=5083545 (NB spaces can be hard to find at any time though) 2. It’s a stone's throw from Russel Square tube (Piccadilly Line) but also not far from Kings Cross which has step free access. 3. I’ve told the venue that some members, like myself, have trouble walking and they’ve given me a room on the ground floor close to the entrance.

Map:

Wimbledon (South LDN)

This group has now closed. Your nearest group will now be Balham.

 

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.

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