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FREE MEMBERSHIP

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Free membership!

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 450 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 be eligible for a free 12-month subscription of MedicAlert and a free Sunflower lanyard and vEDS 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.

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 guidance including 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.

Once your application has been accepted will receive our VEDS Information Pack and a personalised VEDS Emergency Pack, usually within 5 working days. You will also receive an introductory call which provides advice and management guidance about vascular EDS and details of our free, confidential counselling service.

Please note: We are a registered charity based in the UK, and as such you need to be aware that some of our resources and benefits listed below are UK specific, and are subject to change and availability without notice. Information packs and resources are only available to members who are vEDS diagnosed and/or caring for someone who has vEDS in the UK.

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Membership Benefits

EDUCATION

• Patient Self-Advocacy support

• Conference & Symposiums

• School support and guidance

• Free information leaflets

• Weekly e-newsletter

RESEARCH

• Access to Research

• Access to Clinical Trials

• Access to Surveys

SUPPORT

• Initial introductory meeting and ongoing support

• VEDS Information Pack

• VEDS Emergency Pack

• Mental health & wellbeing resources

• Free Counselling Service

• Patient Coordinator support

• Freephone Helpline

• Peer Support Service

• Retreat Weekends

• Private Facebook group

• Regional Support Groups

• Virtual Support Groups

• Ambulance Markers

• Summary Care Record

• Emergency preparedness resources

• Emergency Information for Medical Professionals available in 12 languages

Additional Benefits

• Free Sunflower lanyard and vEDS information card

• Free 12-month MedicAlert subscription (UK, Ireland & Australia)

• Free 24-month MedicAlert renewal programme (ends 31 Dec 2024)

• Exclusive discount on Careline365 SOS alarm subscriptions

• Exclusive discount on merchandise purchased from our online store

Apply Now

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:

NHS / CHI 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 / CHI 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 / CHI Number:

Date of Birth:

Date of Diagnosis:

Full Name:

NHS / CHI 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 letter / genetics report please attach here:

Attach File:

Upload file

Attach File:

Upload file

Attach File:

Upload file

Diagnostic Confirmation

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

Recently diagnosed / appointment with the EDS Service in Sheffield/London?

Please proceed with your application today and forward a copy of your confirmation letter to us when you receive it.

Diagnostic confirmation letters / genetics report should be sent to us by either:

Upload file:

Attach to the application form above before submitting

Email: diagnosis@annabelleschallenge.org

Post:

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

WhatsApp:

Send to +441617974746 via the 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. For information about how we'll keep your data safe can be found in our Privacy Policy.

Our Socials

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VEDS PATIENTS

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AGE RANGE

EDS Service

We work closely with the EDS National Diagnostic Service, a highly specialised service commissioned by NHS England for individuals and families who are suspected to have complex Ehlers-Danlos Syndrome.

Established in 2009 the service runs two specialist clinics for patients based at Sheffield Northern General Hospital and the Northwick Park & St Mark's Hospitals in London.

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 and is a certified Level 2 in counselling skills.

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.