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If you or a loved one have been diagnosed with vascular EDS (vEDS) joining us is one of the best ways to make sure you get the support needed.

You should also feel safer in the knowledge that you are not alone with your condition. With over 400 members, our organisation forms a strong and reliable network for vascular EDS, this allows us to advocate in the local community and work directly with the patients and families we support.

If you live in the UK, Ireland or Australia you will also be eligible for a 12-month free subscription of MedicAlert and a free Sunflower lanyard and EDS awareness card.

On a practical level we can work with you to put plans in place for you and your loved ones touched by vascular EDS. You will also receive a VEDS Information Pack which provides advice and management guidance about vascular EDS.

If it is your child that has been diagnosed with vascular EDS we provide support for nursery and school settings including attending in-person to provide a presentation and help with implementing plans to help keep your child safe with vEDS. We can also help with your child's transition from primary to secondary school.

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Membership Benefits

FREE MEMBERSHIP FOR LIFE!
VEDS Information Pack
VEDS Emergency Pack
Introductory meeting & ongoing support
Emergency preparedness resources
Emergency Information for Medical Professionals available in 8 languages
Patient Self-Advocacy support
Access to our Counselling Service
School/Nursery support, training and advice
Referral to the NHS EDS Service (UK VEDS patients only)
Exclusive Careline365 SOS alarm discount
Free 12-months subscription of MedicAlert (UK, Ireland & Australia)
24-month extension MedicAlert renewals programme
Free Sunflower lanyard and EDS information card
Vascular EDS information leaflets
Access to vEDS research projects and clinical trials
Access to our private Facebook group
Ambulance Marker registered on your address
Priority access to tickets for our retreat weekends and conferences
VEDS regional support groups
Weekly e-newsletter.

PLEASE NOTE: If you and/or a family member have been diagnosed with vascular EDS we will require a copy of the diagnostic letter confirming diagnosis before we can process your membership application, once approved you will have free access to all our resources and support services listed above.

Recently diagnosed by the NHS EDS Service in Sheffield/London? Please proceed with your application and forward your diagnostic confirmation letter as soon as you receive it.

If you do not have a genetically confirmed diagnosis of vascular EDS and you would like to join Annabelle's Challenge to support us that's great! Simply tick the ‘Neither of the above, I just want to support the charity' option in the application form below.

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

Membership Application

First Name:

Last Name:

Email:

Address:

Town:

Post Code:

Region:

Date of Birth:

Telephone Number: 📞

Where did you hear about us?

Why are you joining us today?

MY DIAGNOSIS

If YOU have been diagnosed with vascular EDS you need to complete this section:

Date of diagnosis:

Method of diagnosis?

Enter the name of the hospital / genetics centre who confirmed your diagnosis:

Post diagnosis confirm if support is now being provided to you by:

UK Patients Only

Personalise your VEDS Emergency Pack: (UK patients only)

NHS Number:

GPs Name & Address:

Next of Kin First Name:

Next of Kin Last Name:

Next of Kin Telephone: 📞

Joining for a relative?

Joining on behalf of the patient? Please complete this section with their information:

First Name:

Last Name:

Date of Birth:

Relationship to the patient?

Date of diagnosis:

Method of diagnosis?:

Enter the name of the hospital / genetics centre who confirmed their diagnosis:

Post diagnosis confirm if support is now being provided by:

NHS Number:

GPs Name & Address:

Next of Kin First Name:

Next of Kin Last Name:

Next of Kin Telephone: 📞

Additional Family Members

Additional Family Members:

Full Name:

NHS Number:

Date of Birth:

Date of Diagnosis:

Full Name:

NHS Number:

Date of Birth:

Date of Diagnosis:

Additional Information

Additional Information:

Have you or any of your family had a bowel rupture, arterial dissection, aortic aneurysm etc?

Any Comments:

Your Personal Data

I hereby consent to the personal data I have entered in this application form being stored electronically, processed and used for the purpose of establishing contact and future support from Annabelle's Challenge and if/when required by the NHS EDS National Diagnostic Service.

I agree to receiving the Annabelle's Challenge weekly e-newsletter containing charity updates, management advice, fundraising ideas and the latest developments related to vEDS. To unsubscribe from our newsletter you can do so by simply selecting the unsubscribe option on the newsletter.

I am aware that I can revoke my consent at any time.

I understand Annabelle's Challenge is a patient organisation and does not provide medical advice and I should contact my local doctor or GP with any medically related concerns or questions. The information provided by the charity is obtained from various reliable sources and should not be construed to represent opinion or advice by Annabelle’s Challenge and/or its staff, trustees and volunteers.

Diagnostic Letters

If you have a copy of your diagnostic results please attach here:

Attach File:

Upload file

Attach File:

Upload file

Attach File:

Upload file

Diagnostic Confirmation

VEDS diagnostic confirmation letters should be sent by either:

Upload file: Attach your letter to your application form above before submitting

Email: diagnosis@annabelleschallenge.org

Post: Annabelle's Challenge, Walshaw Park House, Walshaw Road, Bury, BL8 1PY

WhatsApp: +441617974746 which is a free encrypted messaging app

We won't pass your personal details on to anyone else and we do not have access to your NHS medical records. We work closely with the EDS National Diagnostic Service who can provide additional support including genetic counselling for UK patients.

Please note we are unable to confirm your membership and provide you with any resources or support until we have received confirmation of a vEDS diagnosis.

For information about how we'll keep your data safe can be found in our Privacy Policy.

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VEDS PATIENTS

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AGE RANGE

Meet Danika

Danika - Patient Coordinator

Danika joined Annabelle's Challenge in April 2022 taking on the role of patient coordinator.

"Before joining the charity I was a childcare professional with 13 years’ experience of working with children and their families. Recently I completed my studies of Mental Health at college and gained a qualification in Mental Health Awareness Level 1 and Level 2 in Social Care and Children’s And Young Peoples Mental Health."

Alongside her role as a patient coordinator, Danika is also a Mental Health First Aider accredited by MHFA England.

Meet Scarlett

Scarlett - Patient Coordinator

Scarlett recently joined the Annabelle's Challenge team taking on the role of patient coordinator.

"I am so pleased to be given this amazing opportunity to take on the role as a patient coordinator for the charity to help support all our members both existing and newly diagnosed. I have previous experience in childcare, and I love to travel especially to Ireland".

Alongside her role as a patient coordinator, Scarlett is also a Mental Health First Aider accredited by MHFA England.