Resources and Medical Papers

Resources and Medical Papers

These are articles and external links to the websites of organisations that are carrying out research and other medical work into different aspects of Wolfram Syndrome, that you might be interested in.

  • T-KASH Transition Resources– September 2023 – T-KASH (Transition – Knowledge And Skills in Healthcare) are FREE resources which were originally created in 2015 by young people from the Alström Syndrome UK (ASUK), Hear My Voice Youth Forum. The resources are designed to support young people, families, and healthcare professionals, to help everyone understand the transition journey and the things that are important to young people. At the end of 2022, we began the process of updating the T-KASH resources to ensure they are inclusive and represent the needs of young people within the rare disease community.
  • COORDINATING CARE: Learning from the experiences of people living with rare conditions – A new report released on 28th February 2023
  • Be A Tiger Foundation – USA- Funding rare disease clinical research to save lives. Their mission is to accelerate the discovery of treatments and cures for Wolfram Syndrome and eventually other rare and ultra-rare diseases.
  • Diabetes Action Now – is a joint initiative of the World Health Organization and the International Diabetes Federation.

  • Diabetes UK – Link to information about Pumps/Aids.
  • Dexcom – Link to information about Dexcom Monitoring.
  • DiabetesGenes Prof Andrew Hattersley’s team brings together researchers working in molecular genetics, human physiology, biochemistry, clinical investigation, and patient care.Their ground-breaking work in monogenic diabetes (diabetes caused by a change in a single gene) has received over 30 national and international prizes and more than £26M in funding since 2009.
  • Wolfram Syndrome Research AllianceFounded by parents of children with Wolfram syndrome, WSRA seeks to promote ​international collaboration among researchers, clinicians, and the Wolfram community to ensure timely and meaningful outcomes of WS research.
  • Wolfram Syndrome & Dysphagia Leaflet What is Dysphagia and what to look out for
  • Wolfram Syndrome Registry Site at Washington University Educational information and research (US)
  • At the 2014 WS Conference Dr Liz Ellis and Dr Liz Hodges came alongAt the 2014 WS Conference Dr Liz Ellis and Dr Liz Hodges came along and told us about the research project they were doing about attending a rare disease clinic when you suffer with a dual sensory impairment. They have produced a report for adult and teenager participants, a video aimed at children, there’s the executive summary, as well as the full report – which can all be found on the University of Birmingham’s website.https://www.birmingham.ac.uk/schools/education/research/victar/research/deafblind-attending-rare-syndrome-clinics.aspx

Although these third party organisations are shown on our website as they may provide helpful information, they are not endorsed by WSUK