Talk to us

Looking for answers? When you have a hospital appointment or visit your GP, you may not take in everything they tell you, or know which questions to ask.


We are here to answer your questions when you get home.

For help with worries and advice about vascular EDS, to someone who’ll listen if you just want to talk, we’ll be there. You’re not alone. Call us 0800 917 8495 (Monday to Friday, 9am–6pm). 

Online Community

We have an amazing UK Facebook closed group: Vascular Ehlers Danlos Syndrome UK that has been set up by those with the condition close to their heart.


They are always open and full of our members ready to listen and offer support.


We also recommend the US Facebook closed group Vascular Ehlers-Danlos (vEDS) Please note both groups are by acceptance only, please only request to join if you or a loved one is touched by vascular EDS.

Social Media

Follow us on social media for news and updates, you can also speak to us directly through our Facebook and Twitter pages.

Our office hours

Monday - Friday09:00 - 18:00
Tel: 0161 763 8741

Helpline: 0800 917 8495

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