Freephone helpline: 0800 917 8495      
Support

We are here to support you!

Freephone Helpline 

0800 917 8495
Need to talk, Need Support?

General Enquiries

0161 797 4746
Weekdays 9am - 5pm

Annabelle's Challenge will help you find answers to questions or guide you through your concerns about vascular EDS (vEDS) even if you or a loved one have not been diagnosed yet.

We know through lived experience the affect a diagnosis of vEDS or the prospect of receiving a diagnosis can have on you and your family. Right from the moment you join us and beyond we will be your constant source of support, guidance and advice.

If and when a definite diagnosis is made, one of our patient coordinators will contact you to talk through the next steps of how we will support you and your family. This can take place in-person or by telephone or video call.

We will also provide you with a VEDS Information Pack and VEDS Emergency Pack plus resources to help manage living with this condition. Join today and receive free membership for life.
Diagnosed with vascular EDS, what now?
Firstly, you are not alone - we are here to support you and your family! Join us today, lifelong membership is free.
  • We will send you a VEDS Information Pack and VEDS Emergency Pack.
  • One of our patient coordinators will contact you to arrange an appointment online, by 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 you live in the UK, Ireland or Australia you will also be eligible for a 12 month free subscription of MedicAlert with exclusive discounts on bracelets. 
  • We are an official partner of Careline365 with exclusive discount on SOS GPS Alarm Pendant plans.
  • If it is a child that has been diagnosed with vascular EDS we provide support for schools and SENCo including attending their school to provide a presentation and help with implementing a health care plan.
Your application to join and access our support and resources is subject to acceptance and diagnostic confirmation of vascular EDS.
Newly Diagnosed?
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. 

Current lead times for diagnostic genetic testing results in the NHS is approximately 12 months, in some instances results are available sooner so we advise to stay with the NHS for genetic testing.

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. 

We are also available on WhatsApp +441617974746, email info@annabelleschallenge.org or Facebook messenger. 

Please note we do not provide medical advice and only provide support and guidance for the vascular type 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 18+ impacted by vascular EDS in the UK. 

For more information on our counselling service click here.

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

400

VEDS PATIENTS

1 - 88

AGE RANGE

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

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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