About us

EDUCATION

RESEARCH

SUPPORT

About us

Annabelle’s Challenge aims to promote awareness and medical research into vascular Ehlers-Danlos Syndrome (vascular EDS).

The charity was founded in 2013 by Jared and Sarah Griffin, after their daughter Annabelle was diagnosed with vascular EDS at the age of 3. We provide support to children and adults touched by vascular EDS (vEDS).

VEDS is thought to affect around 740 people in the UK, it is a connective tissue disorder and means patients are at daily risk of their internal organs and arteries spontaneously rupturing.

Annabelle’s Challenge has grown to become a leading organisation for information and advice on vascular EDS, liaising with health care professionals to raise awareness and increase knowledge and management of the condition.

In addition to tirelessly campaigning for research and funding for vascular EDS, the charity works closely with the EDS National Diagnostic Service, a highly specialised service commissioned by NHS England with clinics based in Sheffield and London.

Annabelle’s Challenge has been officially recognised by Her Majesty The Queen in June 2018, winning The Queen’s Award for Voluntary Service, an MBE equivalent and the highest award that can be made to a voluntary group.

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Our objectives

EDUCATION: To advance the education of the general public and medical profession in all areas relating to vascular EDS.

RESEARCH: The relief of sickness and preservation and protection of good health by the provision of funding for the development of research and early diagnosis of vascular EDS.

SUPPORT: To promote and protect the physical and good mental health of sufferers of vascular EDS through the provision of financial assistance, support, education and practical advice.

Our mission

To improve the quality of life and access to support for children, adults and families affected by vascular EDS.

Working with medical professionals at the forefront of diagnosis and testing, we are committed to education and research, to one day find treatments and ultimately a cure.

To be the most professional, caring, and inclusive organisation, working collectively and individually to continuously meet the needs of all our families, members, volunteers, and associates.

Vision 2025

Vision 2025 is our ambitious strategic plan to improve the support we provide to those affected by vascular EDS.

We started fundraising in April 2013 and so far we have raised over £980,000 thanks to our members, supporters donors and grant funders.

Our next goal is to achieve the £1,000,000 milestone by December 2025 to help us continue to deliver services for patients, families, and healthcare professionals.

By 2025 we aim to:

- Support 500 members/ families
- Support 50 schools
- Host 5 conference/retreat weekends
- Raise £1,000,000
- Fund Research
- Support Clinical Trials

VEDS Support Programme

In August 2021 we were awarded £177,415 in National Lottery funding to support our work with individuals living with vascular EDS. We will use the funds to deliver the VEDS Support Programme which includes helpline support, delivering talks to schools, hosting regional support groups, visiting families in their home, and facilitating ambulance markers.

The new funding from The National Lottery Community Fund will see the charity reach and connect further individuals and families across the vEDS community. At the same time, we will be able to expand our holistic support and increased collaboration with health and educational professionals.

Through our VEDS Support Programme we aim to connect and build relationships across the vEDS community developing their self-help capability, capacity, skills and confidence, in order to:

1) Reduce risks, and potentially save lives, through improved access to services and greater awareness among healthcare professionals, importantly avoiding common mis-diagnosis:

Raising awareness amongst clinicians and healthcare providers since the earlier we achieve a correct diagnosis the better the outcome for the individual diagnosed with vEDS.
Access to Patient Coordinators who manage the helpline and support volunteer Area Coordinators will directly support the vEDS community.
Provide talks in schools to educate teachers and staff about vEDS, support implementation of healthcare plans making them more adaptive and ensure identified risks are minimised to help protect the child diagnosed with vEDS whilst in the school environment.
Attendance of our charity at cardiology appointments in the joint EDS/ICC clinics to provide support directly to patients and family members and to reach out to more people affected by vEDS.

2) Help people better achieve their potential and improve their quality of life:

Provide local support groups lead by volunteer area coordinators who are directly affected by vEDS. The support groups are for parents, carers, friends, children, and partners to provide a safe space to meet others in a similar situation, provide peer support and make lifelong friends.
Home visits to help improve quality of life with mental health and wellbeing support, and to agree care & management plans to help keep them safe and fulfil as much of a normal life as possible living with vEDS.
Facilitating Ambulance markers registered to a patient’s address working with General Practitioners and ambulance trusts to put these in place in case of an emergency.
Provide vEDS management and guidance.

3) Help more people by increasing membership to provide much needed support:

Provide a freephone helpline to supports new and existing patients and family members and those who are suspected/awaiting genetic testing.
Break down barriers preventing access to our services by supporting minority groups such as LGBTQ+ and Black and Minority Ethnic communities.
We work directly with the EDS National Diagnostic Service, a highly specialised service commissioned by NHS England with clinics in Sheffield and London.
Access to online virtual support and 1-2-1 calls.
VEDS retreat weekends, conferences and events for the community.
Drop in 'clinic' at our office in Bury, Manchester.
Peer support 'buddy up' with other vEDS members on our database.
Help with creating a care team.
Access to research study projects.
Access to private Facebook vEDS support groups.
Mental Health First Aid support.
Free MedicAlert UK, Ireland & Australia subscription plus exclusive discounts on bracelets.
New VEDS information pack and introductory call to new members.