Freephone helpline: 0800 917 8495
Sometimes you can be in a state of shock making it difficult to take in what the medical professionals are telling you. The key thing to remember about vascular EDS is that you are in a better position once the diagnosis is known.
Right from the moment when you are diagnosed and beyond, we are a constant source of support and advice. We know first-hand just what a strain on the whole family it is when a loved one is diagnosed with vascular EDS.
Soon after receiving the diagnosis with Annabelle we spent endless hours searching the internet for information and support which was an overload on top of what we were emotionally trying to come to terms with at the time.
We can help you find answers to questions or guide you through your concerns about vascular EDS even if you or a loved one have not been diagnosed yet.
Living with a diagnosis of vascular EDS or the prospect of receiving a diagnosis can have a significant impact not only on the patient but also on the wider family.
We're always here for emotional support especially when things get tough.
If you need to talk to us we are here to support you. Our freephone helpline is available 9am - 6pm Monday to Friday with an answering service, the number to call: 0800 917 8495.
We provide our vascular EDS members a free 12-month membership to MedicAlert UK saving £32.
As an official partner with MedicAlert our members also benefit from exclusive discounts on bracelets and jewellery.
Annabelle’s Challenge supports research which is vital to our rare community. As a small UK charity, we only have limited funding however we can access additional grant funding for research subject to acceptance by our board of trustees and medical advisory board.
Any research proposal must be solely for the benefit of Vascular EDS and we encourage members, medical professionals, and researchers to contact us to discuss any potential future projects.
Our charity has a restricted fund which donors can raise funds for and specify its use, we also have an unrestricted research account should any suitable projects come available.
Proudly supporting the NHS EDS National Diagnostic Service