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

Contact group

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

Contact group

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.

Croydon

Nicci Rogers

Contact group

Hi

My names Nicci, after years of joint related issues, I was finally diagnosed with EDS and other associated conditions at the age of 23.

I have always enjoyed helping others and realised that I wanted to be able to help others with EDS, so I qualified as an orthotist/prosthetist.

I now spend my days running orthotist clinic’s in and around the surrounding areas of London. I specialise in biomechanics and make/prescribe a range of made to measure and off the shelf orthoses, to help alignment/posture, walking and reduce pain.

I’m very passionate about improving the quality of care and am active in creating more awareness around EDS and the care available.

I’m looking forward to being the Croydon area coordinator and growing the EDS community.

I’m very motivated, as there was a lack of support when I was diagnosed, so am delighted to be able to give the support, that I didn’t have to others.

I will be running support groups within the Croydon area, but am also able to do 1:1 if preferred, within local coffee shops.

I will also be helping on the medical advisory panel for any orthotic advice or concerns, so if you have any questions give me a shout.

Date: March 30, 2019

Start: 12:00 pm

Finish: 2:00 pm

Venue: St Augustine Church, St Augustine Avenue, South Croydon, CR2 6BA

Additional info: Living with pain is not only a physical strain but can be an emotional strain as well. As one of the first guest speaker coming to the Croydon support group. A mindfulness therapist will be attending the first half of our support group session to do a mindfulness introduction and a quick relaxation technique. Pete the mindfulness instructor will be joining us in future support group sessions to run mindfulness workshops. He wanted to attend this session to do a quick demo and to give some background information before the sessions start later in the year. Hope to see you all there There are 9 free car parking spaces at the church, free parking up and down the road. Bus stop at the bottom of the road 3 minutes walk away, buses include 60, 166, 407, 466, 312 South croydon bus station 5 mins walk away Entrance: side door directly facing the car park or can enter in the main door disabled ramp . Our room is the small room directly next to the kitchen

Map:

Dagenham (East LDN)

Kelly Casbolt

Contact group

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

Contact group

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: April 28, 2019

Start: 2:00 pm

Finish: 4:30 pm

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

Additional info: Please come along to our next North London support group meeting. It'll be a chance to meet fellow local members in a relaxed, confidential environment with comfy sofas, chairs and tea. We usually start with some introductions and then move onto a general group discussion on a particular subject. Depending on the numbers turning up we may split into smaller groups. There’ll also be plenty of mingling time for you to have general chats one-on-one. 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 (No parking restriction apply on this day). The venue is fully accessible. Entrance via the big blue door in the middle of the building in the picture above. Service dogs welcome but no pets please.

Map:

Woodford

Maria Brown

Contact group

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

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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