(All Document Downloads are in PDF Format)

Videos from the WS Conference 2014

Click Here for Talk 1
Prof. Tim Barrett explains the infrastructure of WS research within the UK.

Click Here for Talk 2
Dr Fumi Urano talking about Patient based Therapeutics for Wolfram Syndrome.

Click Here for Talk 3
Dr Nicola Beer talking about what happens to your skin biopsy.

Click Here for Talk 4
Prof. Tim Barrett - ‘Developing treatments for Wolfram Syndrome in Birmingham’.


EURO-WABB Brochure
An EU Registry for Wolfram, Alström & Bardet-Biedl.

Combating Juvenile Diabetes
A new research document by Fumihiko Urano

Human Molecular Genetics Research Paper into Wolfram
Full Version
Summary (less in-depth technical detail)

Collect Stamps for Wolfram
How you can benefit families by saving and sending used postage stamps.

Marie McGee - Transition Explained

Transition - A Journey for all Young People - as explained by Marie McGee

Wolfram Syndrome Information Day - Rachel Bates
Slides from a PowerPoint presentation given by Rachel Bates detailing current at the information day on 20th October 2012. (Includes Notes)

Wolfram Syndrome Information Day - Tracy Lynch
Speech from the 2012 Information Day detailing the year's fund raising efforts.

A Technical Paper by Professor Tim Barrett on Human Molecular Genetics
Please Note - Links to document from an external site.

Reliability and Validity of the Wolfram Unified Rating Scale (WURS)
An article from the Orphanet Journal of Rare Diseases
Please Note - Links to document from an external site.

Disabled Children and Their Legal Rights -
Securing care and Support for Vulnerable Children
.
Slides from a powerpoint presentation given by Richard Copson, for and on behalf
of Pannone LLP.

Wolfram Syndrome Research
Slides from a PowerPoint presentation given by Professor Tim Barrett detailing current and future research in WS. January 2012.

NHS Wolfram Syndrome Service - UPDATE
Slides from a PowerPoint presentation given on 28th January 2012 detailing progress of the National Wolfram Syndrome Service

Comprehensive Care Plan for Rare Disease Patients

EURO-WABB Press Release
EURO-WABB is a newly launched project that will create a rare diseases registry for Wolfram, Alstrom and Bardet Bieldt.

New Registry for Rare Diabetes
Further information about the EURO-WABB project

Orpha Net Newsletter

Wolfram Syndrome Service - Letter from NHS
Advising agreement to commissioning of National Wolfram Syndrome Service

New England Journal of Medicine - Approach to Research
An article detailing the kind of approach that it is hoped UK and US WS Clinics/Research will adopt.

The Research Situation (2010)
Information from and about Professor Timothy Barrett, detailing the research efforts
both nationally and worldwide.


Wolfram Syndrome UK Twitter
Wolfram Syndrome UK Twitter

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