Freephone helpline: 0800 917 8495      
Newly Diagnosed

We are here to support you!

Freephone Helpline

0800 917 8495
Need to talk? Need support?

General Enquiries

0161 797 4746
Weekdays 9am - 5pm

Newly diagnosed?
Being newly or recently diagnosed with vascular EDS can feel overwhelming. Firstly, you are not alone - we are here to support you and your family!

Whether you're looking for someone to talk to, information on what happens next or how to tell people about your diagnosis, we will help and guide you. 

We know that day to day, many people with vascular EDS live full and enjoyable lives, outcomes are improved by early diagnosis followed by appropriate medical management, lifestyle advice, and medication.

I've just been diagnosed with vascular EDS - what happens next?
What happens after your diagnosis depends on a few things:
  • Who diagnosed you.
  • Where you live.
  • What you'd like to happen. There are resources and plans we can put in place to help you manage your diagnosis.
Join today, membership is free.
Apply online and once we have confirmed your membership:
  • We will send you a vEDS information pack which includes free resources, advice on how to manage vascular EDS, support for nursery/schools and emergency information, usually within 5 working days.
  • One of our coordinators will contact you to arrange a phone call or virtual meeting to answer any questions you might have and to introduce you to Annabelle's Challenge and the support we provide.
  • Your coordinator can advise on how to access a referral to the EDS Service if you are not known to them. (UK patients only). The EDS Service is a highly specialised service commissioned by NHS England with clinics in Sheffield and London.
  • If you live in the UK, Ireland or Australia you will also be eligible for a 12-month free subscription of MedicAlert and provides a unique ID that links your medical information.
  • If it is a child that has been diagnosed with vascular EDS, we can provide support to nursery and schools including representative's from the Annabelle's Challenge team attending in-person to provide guidance including help with implementing care plans.
  • Free access to the Annabelle's Challenge Counselling Service.

565

VEDS PATIENTS

1 - 89

AGE RANGE

10

Over 10 years service supporting the Vascular EDS community.

COL3A1

Vascular EDS is caused by a mutation in the COL3A1 gene.

740

It is estimated around 740 people have Vascular EDS in the UK.
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