All is clear now - AA - STARS - AFA thanks to Trudie Lobban

[Afbiff]

I went to look at the stuff from Patients Day and was confused about the three different organisations there. I emailed Trudie and this is the lovely reply she sent which she says I may share on the forum. So here it is for anyone else who may be a little muddled.

On 13 Nov 2020, at 08:59, Trudie Lobban wrote:

Thank you for your e mail and so glad you benefit from the AF Forum – we have so many members – there is certainly a wealth of information and next week we will be launching a new video library to add to our extensive educational resources.

To clarify – the three organisations are independent registered charities. I established STARS in 1993 after my daughter was diagnosed with reflex anoxic seizures and at the request of her consultant – to speak to a few other parents – 27 years later and I have probably spoken to over a million people!

Arrhythmia Alliance was established in 2004 after a very successful campaign which STARS launched in October 2003 and invited other groups and individuals to join calling on the Health Minister and policy makers to add an extra chapter to the National Service Framework on Coronary Heart Disease (in 2000 this was published with seven chapters and the word ‘arrhythmia’ was only mentioned once – no mention of AF or syncope or any other arrhythmia). This campaign was run from my home and within eight months through letter writing and meetings with the Health Minister and the National Director of Heart Disease, we hosted our first arrhythmia awareness week in Westminster where it was announced that they would include an extra chapter on arrhythmias and sudden cardiac death. I was asked to be the first non-medical person to sit on the expert writing group – a real honour! It was at this event with the support of Dr Adam Fitzpatrick, Prof John Camm and others, including patients, healthcare professionals and organisations that I launched Arrhythmia Alliance – a coalition of patients, caregivers, patient groups, healthcare professionals and healthcare organisations, policy makers and allied professionals. Bringing together all those involved in or affected by arrhythmias.

By 2007 51% of our enquiries to A-A were AF related. Prof John Camm and myself searched the internet and at that time there were no other organisations in the world offering support, information, education and awareness on atrial fibrillation. Both STARS & A-A had become internationally recognised and so we launched AF Association internationally.

The three organisations remain independent however work together. Until Covid, we shared the same office and staff are able to cross over to help and support each cause. The Charities Commission welcome this as it saves money and resources, yet we clearly identify the needs of those with these conditions. I am sure when diagnosed with a condition you search by the condition not by an organisation. Once AF Assoc launched we were inundated with enquiries from people who were desperate to find this support and information.

And so the three organisations are independent and individually registered with the Charities Commission however work in collaboration at all times.

Arrhythmia Alliance hosts World Heart Rhythm Week (first week of June annually) and AF Association host Global AF Aware Week (2/3rd week of November annually).

I hope this explains and of course happy for you to share on the forum if you think this would help explain to others.

Please do not hesitate to contact me at any time and do look out for our video library being launch next week!

Take care, stay safe and hope you remain well.

With Best Wishes

Trudie