AVM Support UK is a unique support service, in fact the only UK support service to offer patient friendly information and support to all who are interested or whose lives have been affected by the rare congenital defect 'Arteriovenous Malformation'.  We also provide information and support on related conditions caused by or resulting from an Arteriovenous Malformation (also known as AVM).

When and Why AVM Support UK Was Launched?

The AVM Support UK website was launched in May 2003 by Jan Harrington.  After she was diagnosed with a cerebral Arteriovenous Malformation in September 2000, Jan became troubled by the lack of information available to patients in the UK and made a conscious decision to change this.  

Jan explained that at the age of 30 she began having neurological problems.  In September 2000 her GP offered the good news that it was now a matter of record, that she had a brain!  But the bad news was that also had an Arteriovenous Malformation.  Immediately she began to ask questions; she needed to know what this Arteriovenous Malformation was doing in her brain and why it had happened to her. That was when the problems began; nobody seemed to be able to give the answers required and the most frustrating part was that nobody could even point her in the right direction to find the information she so desperately craved.  Jan wanted to speak to other people who had gone or were going through a similar situation.

She began to search all avenues for answers. First port of call was the Internet and she was surprised to find a lot of solid information, which helped in coming to terms with her condition and the types of treatment that she might require. She also found a support network that was able to resolve many of basic questions. The one thing she could not believe was that all support was coming from America and elsewhere. Nothing even remotely similar was available in the United Kingdom.

It was at this point that she chose to launch a website of her own. And in May 2003 she did just that.  Jan launched the AVM Support UK website with the backing and support of her neurosurgeon and family.  The response was phenomenal with interest from patients, families, carers and professionals alike.  The website grew quickly and within a short time it became apparent that this was not a job for one person; no matter how committed.

How We Have Evolved

One AVM Sufferer had now gained momentum and in September 2004 AVM Support UK became a Constituted Community group.  Within weeks AVM Support UK – the community group - had received funding from the Big Lottery to develop their Aims.  The funding would enable AVM Support UK to develop the existing facilities and offer additional services too.

That brings us to the launch of our website in March 2005.  The new site has many services available to our users.  For further details as to the kind of support and services we offer visit the ‘Services We Provide’ section which can be found in the left hand vertical navigation bar.