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)

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.

Date: June 30, 2019

Start: 2:00 pm

Finish: 4:30 pm

Venue: St Paul’s Church Hall, 5 Rossmore Rd, NW1 6NJ

Additional info: We'll have a mixture of small group discussion and mingle time. Getting there Tube / Train: Marylebone Station (Bakerloo line) Buses: 139 &189 buses stop outside. Car: It's residents parking only. Useful info The venue is wheelchair accessible and has a disabled toilet. Assistance animals welcome but no pets please. Tea / coffee / water will be available.

Map:

Date: September 7, 2019

Start: 2:00 pm

Finish: 4:30 pm

Venue: University College of Osteopathy, 275 Borough High Streeet, London, SE1 1JE

Additional info: Our guest speaker will be non other than our wonderful new Croydon Volunteer Coordinator, Nicci Rogers. Nicci Rogers is a qualified orthtotist/prosthetist who works in some of the specialist hospitals in and around London. Nicci specialises in EDS/hypermobility, diabetes, functional electrical stimulation, orthopaedic footwear, and dynamic lycra are just a few of her specialities/interests. Nicci Rogers was diagnosed with EDS over 10 years ago and uses her knowledge to help others, including being the charity's orthotics expert. How can orthotics help me? Orthotics is a medical speciality that focuses on the design and application of orthoses. An orthotic is an externally applied device, brace or support which are designed to provide the following: •Correction/prevention of a physical deformity •Reduce the risk of injury •stabilisation of joints •Reduction of pain •Improvement of mobility •Reduction of instability The presentation will run approx. 1.5hrs with lots of time for Q&A session at the end. The presentation will be broken down into 4 sections: 1)What is orthotics and how can orthotics help me? 2) List of orthotic devices assessments available on NHS 3) Products online, are they good or bad for me? 4) Instability orthotic products – demo of a range of products that everyone can try on. Closing - Q&A session Getting there University College of Osteopathy Lecture theatre, ground floor, near the main entrance. Nearest tube/train stations: Borough & London Bridge Useful info The venue is wheelchair accessible.

Map:

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: June 29, 2019

Start: 12:00 pm

Finish: 2:00 pm

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

Additional info: 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:

Date: July 27, 2019

Start: 12:00 pm

Finish: 2:00 pm

Venue: Wallington Library, Shotfield, Wallington SM6 0HY

Additional info: When you enter your library, please make your way to the lifts or the stairs The room is on the 1st floor directly opposite the lifts. The room is the comfortable room with comfortable chairs and a piano There is a hot water tap and fridge which we have us of The venue has disabled access (ramp) and disabled toilets Car parking: there is a car park with loads pf spaces connected to the library parking for 2 hours cost up to £2.00. There are lots of free disabled parking spaces There is also another car park directly opposite this one there is free car parking up and down the side roads which is a short walking distance from the venue and a train station near by. Buses 410, 151, bus stop called shotfield – this stops directly at the door of the library Buses 127, 151, 157, 410, 455, 463, 612, 627, 633 stop at Wallington town centre, this is less than 5 minutes’ walk away from the venue

Map:

Date: August 25, 2019

Start: 10:00 am

Finish: 12:00 pm

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

Additional info: 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:

Date: September 28, 2019

Start: 12:00 pm

Finish: 2:00 pm

Venue: Wallington Library, Shotfield, Wallington SM6 0HY

Additional info: When you enter your library, please make your way to the lifts or the stairs The room is on the 1st floor directly opposite the lifts. The room is the comfortable room with comfortable chairs and a piano There is a hot water tap and fridge which we have us of The venue has disabled access (ramp) and disabled toilets Car parking: there is a car park with loads pf spaces connected to the library parking for 2 hours cost up to £2.00. There are lots of free disabled parking spaces There is also another car park directly opposite this one there is free car parking up and down the side roads which is a short walking distance from the venue and a train station near by. Buses 410, 151, bus stop called shotfield – this stops directly at the door of the library Buses 127, 151, 157, 410, 455, 463, 612, 627, 633 stop at Wallington town centre, this is less than 5 minutes’ walk away from the venue

Map:

Date: October 26, 2019

Start: 10:00 am

Finish: 12:00 pm

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

Additional info: 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:

Date: November 30, 2019

Start: 12:00 pm

Finish: 2:00 pm

Venue: Wallington Library, Shotfield, Wallington SM6 0HY

Additional info: When you enter your library, please make your way to the lifts or the stairs The room is on the 1st floor directly opposite the lifts. The room is the comfortable room with comfortable chairs and a piano There is a hot water tap and fridge which we have us of The venue has disabled access (ramp) and disabled toilets Car parking: there is a car park with loads pf spaces connected to the library parking for 2 hours cost up to £2.00. There are lots of free disabled parking spaces There is also another car park directly opposite this one there is free car parking up and down the side roads which is a short walking distance from the venue and a train station near by. Buses 410, 151, bus stop called shotfield – this stops directly at the door of the library Buses 127, 151, 157, 410, 455, 463, 612, 627, 633 stop at Wallington town centre, this is less than 5 minutes’ walk away from the venue

Map:

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: 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.

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

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.

More Support

Support groups, advice with work, help with benefits and more