This is the official website of the Wilson’s Disease Support
Group – please take a look round.
WDSG-UK was founded in the year 2000 by Caroline Simms,
PhD, to provide a support network
for Wilson’s disease patients, their families and friends. Membership
is open to all and covers the cost of our annual newsletter.
If you are at all interested, please join.
News
Annual Gathering - Sunday 21 July 2013
WDSG-UK will be holding its annual gathering and AGM this summer on Sunday, 21 July 2013 at the Cambridge Rugby Union Football Club (CRUFC), Grantchester Road, Cambridge, CB3 9ED. Patients, their families and interested parties are all welcome. Booking forms will be sent to members with this year's newsletter in April. Non-members, please request a booking form from our membership secretary, Linda Hart
The Rugby Club (www.crufc.co.uk) is on the western outskirts of Cambridge, about 1.5 miles from the city centre. There is ample free car parking on site.
(Google
Map)
Wilson’s Disease Support Group Annual Meeting, 2012 - Summary
For once this summer’s rain had relented and Sunday, July 15th was a relatively dry day for the WDSG-UK Annual Meeting. Our venue was again the Cambridge Rugby Union FootballClub in Grantchester Road, where Linda and Valerie welcomed the many Group members, old and new, who included for the second year Allie Johnston and her mother, Rita, from Edinburgh. Also, we were pleased to be joined by Malin Lundberg and her friend Camilla who had travelled from Stockholm to be with us. The Group’s links with Addenbrooke’s Hospital remain strong. Current staff members Dr Bill Griffiths, Consultant Hepatologist, Dr Richard Sandford, Honorary Consultant in Medical Genetics and Dr George Mells, Clinical Reader in Hepatology attended together with Dr John Walshe and Kay Gibbs, who were previously attached to the Department of Medicine at Addenbrooke’s. Our Medical Advisers were augmented by the presence of Dr James Dooley, Consultant Hepatologist at the Royal Free Hospital, London.
The morning’s proceedings began with a summary by Dr Rupert Purchase of the Group’s involvement over the last year with EuroWilson and with Rare Disease UK. The UK government published a Plan for Rare Diseases in 2012, and WDSG-UK has taken part in the Consultation exercise for this Plan. Rupert emphasised the importance to patients of having WDSG-UK there to represent their interests as new policy issues and networks for rare diseases emerge.
Following Rupert’s talk, Dr Richard Sandford gave an eloquent presentation on the genetics of Wilson’s disease, and the role of molecular genetics as a diagnostic tool for detecting mutations in the ATP7B gene.
Lunch was followed by a raffle (organised by Belinda Diggles) and the formalities of the 2nd WDSG-UK AGM. The current Management Committee was re-elected for the year 2012- 2013 and a new committee member, Mary Fortune, was co-opted. Univar’s generous support of WDSG-UK was re-emphasised by a donation presented by Ray Estall. Then to our great delight, Allie Johnston came forward and presented the Group with a very generous cheque.
WDSG-UK President Dr John Walshe completed the day’s presentations with an account of the treatment of Wilson’s disease. This successful meeting concluded with questions for the medical consultants followed by Group photographs, taken inside the clubhouse this year (by Barry Diggles) against the backdrop of the flooded rugby fields outside.
Visitors to this site who are not already members of WDSG-UK might like to consider joining our Group. Subscriptions are £7.50 for UK residents or £10 if you live outside the UK. Membership forms may be downloaded from this website or alternatively please ask Linda for a copy.
Membership entitles you to a copy of the current Newsletter and also to an invitation to attend our popular annual meeting.
Our negotiations with HM Revenue & Customs have been successful, and the Wilson's Disease Support Group - UK is now accepted as a charity for tax purposes (from August 19th 2010). We are now entitled to tax repayments under the Gift Aid scheme and we can look forward to the other advantages of recognition as a charity as our annual income grows.
Welcome!
Welcome
The Wilson’s Disease Support Group - UK (WDSG-UK) is an all volunteer
organisation which strives to promote the wellbeing of patients with
Wilson’s disease, their families and friends.
The organisation aims to provide informative
articles about the nature of the disease, articles
written by patients, families and friends, about
their experiences of the disease, recent progress
in treatment and much more by way of an annual
newsletter. The organisation also aims to promote
networking of Wilson’s disease patients
and their families by helping and encouraging
them to correspond with one another.
The organisation also strives to promote a wider
awareness of Wilson’s disease within the
medical profession.
Bonjour!
Groupe de soutien
aux personnes atteintes de la maladie de Wilson – Royaume
Uni
Le groupe de soutien aux personnes atteintes
de la maladie de Wilson – Royaume Uni (the
Wilson’s Disease Support Group – UK,
en anglais) est une association dont le but
est de promouvoir le bien des patients atteints
de la maladie de Wilson, ainsi que de leur proches.
Notre association fournie des articles qui décrivent
la nature de cette maladie. Ces articles sont écrits
par les patients eux même, leurs familles
et leurs amis et parlent de leur vie où la
maladie est constamment présente, des récents
progrès dans son traitement et bien plus
d’information est donnée dans une
lettre publiée chaque année. Un
autre but de cette association est de promouvoir
les contacts entre les personnes atteintes et
leur famille en les aidant et en les encourageant à correspondre
entre eux.
Nous essayons aussi de promouvoir une plus grande
reconnaissance de la maladie de Wilson dans le
cercle médical.
Bienvenidos!
El Grupo de ayuda para la enfermedad
de Wilson- Reino Unido
El grupo de ayuda para la enfermedad de Wilson-Reino
Unido (WDSG-UK) es una organización de
voluntarios que se esfueza en promover el bienestar
de los pacientes de la enfermedad de Wilson, así como
de sus familiares y amigos.
La organización tiene como objetivo el
proveer artículos informativos acerca de
la naturaleza de la enfermedad, artículos
escritos por otros pacientes, familiares y amigos
acerca de sus experiencias con la enfermedad,
los progresos recientes para el tratamiento de
del mismo, y mucho más por medio de un
boletín de noticias anual. La organización
tambien tiene como finalidad el promover el establecimiento
de una red para pacientes con la enfermedad de
Wilson y para sus familiares con el motivo de
ayudarse y darse ánimo mutuamente.
La organizacioón tambien se dedica en
mantener al tanto acerca de la enfermedad de
Wilson dentro de la profesión médica.
Benvenuto!
Il Wilson’s Disease Support Group - UK
(WDSG-UK) è un’organizzazione composta
da volontari che si sforza di promuovere il benessere
dei pazienti con malattia di Wilson, delle loro
famiglie ed amici.
L’organizzazione mira a fornire supporto
informativo, attraverso un bollettino annuale,
che contiene articoli riguardanti la natura della
malattia, le esperienze dei pazienti, delle famiglie
e degli amici, nonché i recenti progressi
nel trattamento e molto altro ancora.
L’organizzazione mira anche a promuovere
una rete di pazienti con malattia di Wilson e
le loro famiglie aiutandoli e incoraggiandoli
a corrispondere tra loro.
L’organizzazione si sforza anche di promuovere
tra i medici una maggiore consapevolezza sul morbo
di Wilson.
Herzlich Willkommen!
Die Selbsthilfegruppe Morbus Wilson Großbritannien – (WDSG-UK) ist eine Organisation von Freiwilligen. Ihr Ziel ist es, das Wohlbefinden der an Morbus Wilson erkrankten Patienten, deren Familien und Freunden, zu fördern.
Wichtig ist uns dabei, informative Artikel über die Krankheit zu sammeln und in Form eines einmal im Jahr erscheinenden Mitteilungsblattes zu veröffentlichen. Viele Artikel darin werden von den Patienten selbst verfasst, oder deren Familien und Freunden und beschreiben Ihre Erfahrungen mit der Krankheit, aktuelle Behandlungsfortschritte und vieles mehr.
Auch soll die Kommunikation der Wilson Patienten und Ihrer Familien untereinander gefördert werden. Sehr wichtig ist uns außerdem, das Wissen um die Wilson Krankheit unter der Ärzteschaft zu verbreitern.
