r(20) stand ESNA 2016

ESNA – June 2016, Manchester

Allison went along to the Epilepsy Specialist Nurse Association Annual conference in Manchester to meet with 80 ESN’s from around the UK, to find out what they knew about r(20) and see if they had a
Chancellors Hotel Manchester
19 June 2016
Don Gordon at ECRD 2016

ECRD – May 2106, Edinburgh

Don attended this important event. Here's what he had to say: Rare Connect Community – It was good to meet with Robert Pleticha who has been instrumental in helping us set up our own profile and
Edinburgh International Conference Centre
26 May 2016
r(20) stand RCPCH 2016

RCPCH – April 2016, Liverpool

Don had the opportunity of attending two events so far this year on behalf of our charity to raise awareness and learn more about building bridges and our capacity in order to achieve some of our core
ACC Liverpool
26 April 2016
r(20) stand at BPNA Sheffield 2016

BPNA – January 2016, Sheffield

Following our medical advisor, Sophie's recommendation and introduction, Allison and David hosted a stand at the annual British Paediatric Neurology Association conference (BPNA) in Sheffield, held ov
City Hall, Sheffield
27 January 2016
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ILAE British Chapter Annual Scientific Meeting 2015

Information on this event to be posted shortly....
Institute of Education
24 September 2015
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AGM Central London: Sun, 5th July 2015

Members/supporters - please join us for our forthcoming AGM.
Royal Society of Medicine, London
05 July 2015
ESHG Glasgow

ESHG Conference Glasgow, June 2015

As I write this update for this particular conference it struck me how quickly time has passed over the past decade and my personal involvement with r(20) syndrome . I mention this only in context of
SECC, Glasgow
12 June 2015
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1st Annual Genetic Disorders Leadership Symposium report by Allison

At present in the UK, there is great flux in all aspects of the lives of families affected by a genetic disorders. The NHS is undergoing major changes in its core structure, the benefits system is bec
Amba Hotel, London, UK
06 March 2015
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The Unusual Suspects – A Symposium of Rare Diseases

In a week of celebrating rare diseases, Don and Allison attended a symposium organised by the Medical Genetics Section of Students4RareDiseases. The meeting aimed to encourage medical students and
Royal Society of Medicine, London
25 February 2015
Matthew's Friends - Liverpool, 7 - 10 October 2013

Global Symposium for Ketogenic Dietary therapies

for Epilepsy and Other Neurological Disorders We exhibited our brochure and new r(20) flyer for health professionals on the Matthews Friends stand at this important event. Allison attended on the
Liverpool, United Kingdom
07 - 10 October 2014