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

Anne Lavery and Robin Hosking

admlavery@gmail.com robin@hosking.me

 

Date: September 2, 2018

Start: 2:00 pm

Finish: 4:30 pm

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

Additional info: Specialist Physiotherapist Jason Parry will be giving a talking on exercise and EDS. Theme MOVE: physio/activity 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.

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: June 24, 2018

Start: 2:00 pm

Finish: 4:30 pm

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

Additional info: This will be a family-friendly social gathering so please feel free to bring along your children. There’ll be zebra-themed craft table for them, but any other games or activities you can bring along would be welcome. If the weather's nice, we’ll also have access to the patio/garden area. For adults it’ll be a good opportunity to mingle and chat over refreshments. Meeting will be in the main Hall and is wheelchair accessible with disabled toilet facilities. 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.

Woodford

Hiya,

My name is Ria and I was diagnosed with Ehlers-Danlos Syndrome along with a few other related conditions.

I’m eager to get to know you all and cannot wait to expand the EDS community, whether it be something that affects you directly or someone you care about.

I look forward to seeing you at upcoming Support Group Meetings or to just have a chat if you feel you need someone to talk to. I’m also equally keen to get to know some more people in the community and raise awareness about the charity.

– Ria

Date: March 25, 2018

Start: 1:00 pm

Finish: 3:00 pm

Venue: Costa Coffee, Unit 5, The Broadway, IG8 0HL

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