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February 27, 2015

Genomics News
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» Raising our hands to support Rare Diseases!

Rare Disease Day 2015 Tomorrow, February 28th, is Rare Disease day. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign primarily … Continue reading

January 5, 2015

Genomics News
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» Dr Mary Frances Lyon 1925 – 2014

It is with sadness that I learned today of the death on 25th December 2014 of Dr Mary Lyon FRS. I had only recently written about her, as someone who had been a source of inspiration to me during my … Continue reading

October 28, 2013

Genomics News
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» Alzheimer’s insight from DNA study

A clearer picture of what causes Alzheimer’s disease is emerging after the largest ever analysis of patients’ DNA, BBC Health news reports today. A massive international collaboration has now doubled the number of genes linked to the dementia to 21. … Continue reading

October 1, 2013

Genomics News
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» Genetics identified as critical research gap for successful prevention and treatment of breast cancer

BBC Health news reports that leading experts have cited the need to address ten “critical” gaps in knowledge about the development of breast cancer. Finding out how breast cancer spreads and evades therapy is a key concern, they report in … Continue reading

August 7, 2013

Genomics News
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» Breast cancer gene tests may treble on Welsh NHS

According to a recent report on the BBC website the number of people being offered a breast cancer genetic test on the Welsh NHS could treble within the next few years, a leading expert says. The Welsh government is investing … Continue reading

November 5, 2012

Genomics News
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» Telling Stories Understanding Real Life Genetics journal article published

The Glamorgan-based Telling Stories Understanding Real Life Genetics project team, led by Prof Maggie Kirk of the Genomics Policy Unit, were delighted to receive confirmation that our journal article An objective approach to evaluating an internet-delivered genetics education resource developed … Continue reading

September 17, 2012

Genomics News
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» Public consultation begins: Three people, one baby

According to BBC news today, a public consultation has been launched to discuss the ethics of using three people to create one baby. The technique could be used to prevent debilitating and fatal “mitochondrial” diseases, which are passed down only from … Continue reading

June 7, 2012

Genomics News
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» GPU Visiting Professor Dhavendra Kumar’s new book

Kumar D (2012) Genomics and Health in the Developing World, Oxford Monographs in Medical Genetics, Oxford University Press. Dhavendra Kumar is a GPU Visiting Professor, a Consultant in Clinical Genetics at the University Hospital of Wales, Institute of Medical Genetics, … Continue reading

February 7, 2011

Genomics News
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» Just what the doctor ordered – Telling Stories continues to grow!

Telling Stories Understanding Real Life Genetics has expanded to incorporate educational content for doctors. Initially developed for nurses, midwives and health visitors, the stories on the website – which are from individuals with, or at risk of a genetic condition, healthcare professionals, family members or carers – have now been mapped to learning outcomes in genetics for General Practitioners and Medical Undergraduate Students with support from the Wales Postgraduate Deanery for Medical and Dental Education at Cardiff University.

In addition to this new content, the recently revised nursing competences in genetics (Fit for Practice in the Genetics/Genomics Era: A revised competence based framework for nurse education; Kirk et al Preliminary Report, April 2010), which were reviewed and updated last year by a team of experts led by Professor Maggie Kirk (Leader Genomics Policy Unit, HeSAS, and Lead Professional Specialist for Nursing Professions at the NHS National Genetics Education & Development Centre), are now available on the Telling Stories website.

Three new stories have also been published this month; the first is from a nurse, Ruth, specialising in the genetic condition Niemann-Pick disease, the second from a storyteller, Amelia, who describes her expereinces of living with the genetic condition Neurofibromatosis, and the third from Jenny, who describes what it is like to live with two different inherited conditions, facioscapulohumeral (FSH) muscular dystrophy and maturity-onset diabetes in the young (MODY).

New video clips are also available to accompany David’s story about living with the rare genetic condition Von Hippel Lindau.

For enquiries or more information on Telling Stories, please email tellingstories@glam.ac.uk

October 6, 2010

Genomics News
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» Telling Stories tees off at The Belfry!

With Ryder Cup fever sweeping Wales and the UK this week, the Telling Stories team kept up with the golfing theme (minus the dodgy golfing knitwear!) as they visited the famous Belfry Golf Club in the West Midlands to give a ‘masterclass’ on the Telling Stories Understanding Real Life Genetics website to the Association for Healthcare Communications and Marketing conference yesterday. The invite to give the presentation came as a result of the ‘Best Use of New Media’ award that the Telling Stories website won at last year’s AHC conference.

The session, which was attended by delegates from a wide range of backgrounds within healthcare communication and marketing, used Telling Stories as a case study to illustrate how online storytelling can be used as a powerful and effective means of engaging and educating healthcare professionals. As well as giving the audience an overview of the project from its inception to the present, attendees were invited to participate in some group work on both storytelling in general, and using some of the stories featured on the website. From the feedback received on the day, it seemed the session was well received by those attending, who commented that they found it enjoyable and engaging and felt that it provided some good ideas for others wishing to use the storytelling as an educational or training tool. Whilst the masterclass might not have quite reached the frenzied excitement of the final afternoon of the Ryder Cup, like Graeme McDowell’s final putt on the 17th on Monday, it went down well! :)