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 please contact us we are here to support you. Our helpline number is 0161 207 8337 and is open 9am - 6pm Monday to Friday.
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 MedicAlert bracelets.
An Annabelle’s Challenge grant is a one-off payment available to newly diagnosed patients of Vascular EDS, to cover a wide range of practical needs.
Post diagnosis, Vascular EDS patients will encounter additional medical appointments and because it is a life limiting condition, some lifestyle changes will need to be made.
Since the amount of money available for grants is limited in each financial year we will usually only be able to offer this kind of support once.
Award amounts will vary depending on circumstances and needs but the average grant amount will be £250. Higher amounts and exceptional requests will be considered depending on circumstances.