WDSG-UK - Membership

If you are at all interested, please join.

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WDSG-UK 2018 Newsletter

2018 Newsletter

Gift Aid - Donations

WDSG-UK was granted charitable status by HMRC in 2010 and is recognised as a charitable company. As such, WDSG-UK is entitled to claim Gift Aid back on donations, where appropriate.

If you wish to make a donation to WDSG-UK and to Gift Aid it, please complete this form

If you wish to make a donation to WDSG-UK
visit the Virgin Giving website

WDSG-UK on Facebook

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WDSG-UK Pamphlet (2015)

View Interactive Online

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Availability of Mylan Products 250 mg penicillamine for UK Patients with Wilson's Disease. Updated March 2019

Mylan has issued the following statement:

"Sorry to report, the penicillamine date that we now have is the 10th of May. As always, this is a guideline date for availability, but as we have an actual date of availability, this is looking more positive. Apologies for the ongoing inconvenience this causes patients - please be assured we will get the product in and released as soon as possible."

Download the statement

Now available - Food Table - copper in common foods

Food Table assembled by WDSG-UK showing the approximate content of copper in common foods


(Updated 30 March 2019)

Wilson's Disease Patient Register UK

Any patients living in the UK who have been diagnosed with Wilson's disease, will be eligible to have their details entered on 'The Register'


WDSG-UK - A support group for all

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), and Linda Hart, 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.

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.


WDSG Newsletter - 2018

Our 2018 Newsletter is now available to download on this website.

Visit our newsletters

Meeting 2019 & 9th AGM of Wilson's Disease Support Group UK

The annual meeting and 9th AGM of WDSG-UK will take place in the summer of 2019. Details will be announced next spring.

For further information email Val Wheater on val@wilsonsdisease.org.uk

Wilson's Disease Patient Register UK

WDSG-UK is delighted to announce the launch of the Wilson's Disease Patient Register - UK, the main aim of which is to support medical research into Wilson's disease.

Download the WD Patient Register Leaflet

View the Online Interactive Version of the Leaflet

We encourage you to register now:

Download - Registration Form (PDF)

Download - How the register will work (PDF)

Any patients living in the UK who have been diagnosed with Wilson's disease, whether or not they have received a liver transplant, will be eligible to have their details entered on 'The Register'.

If you are a Wilson's disease patient, or are the parent or guardian of a child with the disease, and you would like to participate, please download the Registration Form and send the completed form to Valerie Wheater, the WD Patient Register Co-ordinator, (details printed at the end of the form.)

Alternatively, for further details, please email her on val@wilsonsdisease.org.uk.

For the information sheet on how the Register will work, and to download the Application Form, please click on the above documents.

Research Requests

If you, as a clinician or research scientist with an interest in Wilson's disease, have a request or an initial query relating to the Register, please contact the Register Coordinator at the email address: val@wilsonsdisease.org.uk.

Request details should include the following:

  • Short synopsis of the research request including:
    • NHS or other Authorisation body details
    • Brief description of research, objectives and timescales
    • Patient involvement outline
    • Research contact details

Please note: a small WDSG-UK team will review and validate all research requests before agreeing to involve patients.

WDSG Management Committee

WDSG-UK Management Committee 2018/2019

Chair Jerry Tucker
Hon Treasurer & Hon Secretary Valerie Wheater
Member Mary Fortune
Member Caroline Simms
Member Liz Wood