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0800 917 8495
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0161 797 4746
Weekdays 9am - 5pm

EDUCATION

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SUPPORT

Whether you or someone you care for has been diagnosed with vascular EDS (vEDS) or you’re still searching for answers, you’re not alone.


Through lived experience, we understand the impact that a vEDS diagnosis, or even the possibility of one, can have on you and your family. From the moment you join our community, we offer ongoing support, guidance and reliable information to help you navigate this journey with confidence.


If a confirmed diagnosis is made, one of our Patient Coordinators will contact you to discuss the next steps and how we can best support you. This can take place in person, over the phone, or via video call, whatever works best for you.


Members in the UK, Ireland and Australia also receive a VEDS Information Pack, a VEDS Emergency Pack and access to practical resources designed to help manage life with this condition.


Join today and receive free membership for life.

Diagnosed with vascular EDS, what now?

 

  • We will send you a VEDS Information Pack and VEDS Emergency Pack, usually within 7 working days.

 

  • One of our patient coordinators will contact you to arrange an appointment by video call, telephone or in person to answer any questions you might have and to introduce you to Annabelle's Challenge.

 

  • Your patient coordinator will facilitate a referral to the EDS Service if you are not known to them.

 

  • If it is a child that has been diagnosed with vascular EDS we provide support for schools including attending their school to provide guidance and help with implementing a health care plan.

 

Your application to join and access to our support and resources is subject to acceptance and you providing a genetically confirmed diagnosis of vascular EDS. 

Support around diagnosis
If you have a suspected diagnosis of vascular EDS, waiting for test results or you are trying to access testing for vascular EDS, please contact us for advice. 

Freephone Helpline
If you need to talk to us, we are here to support you. Our freephone helpline is available Monday to Friday 9am to 5pm excluding public holidays, the number to call is 0800 917 8495. Please note we do not provide medical advice and only accept enquiries regarding vascular EDS.

Annabelle's Challenge Counselling Service
Annabelle’s Challenge is pleased to be working in partnership with Rareminds to offer a new Free, Confidential Counselling Service for individuals aged 16+ impacted by vascular EDS in the UK and Ireland. For more information about our free counselling service click here.

Our Tree of Hope

Join Now!

You are just 3 steps away from joining Annabelle's Challenge as a member:

NHS App

The NHS App gives you a simple and secure way to access a range of NHS services. Download the NHS App on your smartphone or tablet via the Google play or App store. You can also access the same services in a web browser by logging in through the NHS website.


You must be aged 13 or over to use the NHS App. You also need to be registered with a GP surgery in England or the Isle of Man.


What you can do with the NHS App:

  • order repeat prescriptions and nominate a pharmacy where you would like to collect them
  • book and manage appointments
  • view your GP health record to see information like your allergies and medicines (if your GP has given you access to your detailed medical record, you can also see information like test results)
  • book and manage COVID-19 vaccinations
  • choose how the NHS uses your data
  • view your NHS number
  • use NHS 111 online to answer questions and get instant advice or medical help near you
Learn More

Free Membership, Join Today!

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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.