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. 

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 us today, lifelong membership is free.
  • 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.
  • 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 a presentation and help with implementing a health care plan.
  • Free access to the Annabelle's Challenge Counselling Service.

400

VEDS PATIENTS

1 - 88

AGE RANGE

Freephone helpline 
0800 917 8495

400

We support over 400 members touched by Vascular EDS. 

COL3A1

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

740

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