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.

Central London

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

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.

online eds uk support group meetings

Online meeting

Date: September 19, 2020

Start: 10:30 am

Finish: 12:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

For all London members - you will need to download the Zoom app on your phone or tablet or log in through their website. Zoom accounts are free of charge. Any issues please call 0208 736 5606

online eds uk support group meetings

Online meeting

Date: November 14, 2020

Start: 10:30 am

Finish: 12:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

For all London members - you will need to download the Zoom app on your phone or tablet or log in through their website. Zoom accounts are free of charge. Any issues please call 0208 736 5606

Croydon

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

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.

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.

East London

Nikki Casey

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

There is currently a volunteer vacancy for this area. Please contact nikki@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support.

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.

online eds uk support group meetings

Online meeting

Date: September 19, 2020

Start: 10:30 am

Finish: 12:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

For all London members - you will need to download the Zoom app on your phone or tablet or log in through their website. Zoom accounts are free of charge. Any issues please call 0208 736 5606

online eds uk support group meetings

Online meeting

Date: November 14, 2020

Start: 10:30 am

Finish: 12:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

For all London members - you will need to download the Zoom app on your phone or tablet or log in through their website. Zoom accounts are free of charge. Any issues please call 0208 736 5606

South London

Beatrice

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

My name is Beatrice and I am really pleased to be a new volunteer Area Coordinator for South/ Central London – I am based in Lambeth (members from different areas are welcome to join too :-))
I studied Media & Communications at Goldsmiths University and have previously worked for ITV and Channel 4. More recently I worked as a Coordinator for the British Red Cross, working across Lambeth and Southwark. I will be providing support online, over the telephone, Zoom and face to face group meetings.
I am here to facilitate meetings and to create a space for people to meet up and support each other, creating a network across central London. I understand there are many different forms of EDS which affect people in different ways. By running the support group I will be here to create a safe, supportive space where everyone feels listened to, supported and together we can create a community support network.
Meetings can be discussed beforehand to ensure it works for everyone 🙂

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.

Waltham Cross

Amanda Moss

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

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.

online eds uk support group meetings

Online meeting

Date: July 29, 2020

Start: 12:30 pm

Finish: 2:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Date: August 19, 2020

Start: 12:30 pm

Finish: 2:30 pm

Venue: Cedars Park Meeting Room, Theobalds Lane, Waltham Cross EN8 8RU

Map:

Date: October 28, 2020

Start: 12:30 pm

Finish: 2:30 pm

Venue: Cedars Park Meeting Room, Theobalds Lane, Waltham Cross EN8 8RU

Map:

West London

Could it be you?

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

There is currently a volunteer vacancy for this area. Please contact nikki@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support.

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

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

There is currently a volunteer vacancy for this area. Please contact nikki@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support.

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

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