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 online and face to face, 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)

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

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

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: December 7, 2019

Start: 12:00 pm

Finish: 2:00 pm

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

Additional info: please RSVP to come to the event, please don't feel that you need to attend once you have RSVP. As we know how daunting a first meeting can be. But please RSVP as we have to count potential numbers for the venue. Croydon’s last support group meeting of 2019 Christmas gathering entrance: you can enter through the side door directly opposite the car park or through the main door, with disabled ramp we have the small room, located next to the kitchen which we have full access to there are 9 available spaces within the church car park which is free and free parking up and down the road there is a bus stop at the bottom of the road 3 minutes walk buses which stop here are 60,166, 407, 466, 312

Map:

Dagenham (East LDN)

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

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 1, 2019

Start: 2:30 pm

Finish: 5:00 pm

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

Additional info: North London Winter Meeting Travel Info: Nearest Tube - Finsbury Park (Victoria, Piccadilly and mainline). Station is wheelchair accessible. 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). Other info The venue is fully accessible. Suitable for age 16+ Assistance dogs welcome but no pets please.

Map:

Waltham Cross

Amanda Moss

Contact group

My name is Amanda and I am the new volunteer Area Coordinator for the Borough of Broxbourne Community (all other area members are of course welcome here too).

My role involves providing support to you all in person, online or over the phone. Generally, we organise a minimum of 4 meetings a year. However, I would like to do more…if we decide we’d like to meet more often – max. 1 meeting every fortnight.

I am here to facilitate meetings and make sure that everyone’s thoughts and feelings are respected, and that everyone has the chance to talk.

I would really like for you to join me, so please come along. There are no expectations, simply turn up and go with the flow of what we all need. Subsequent meetings can be discussed as a group to what it is you would like where I will plan ahead to suit accordingly.

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.

Woodford

No current volunteer

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.

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