Rare Disease Day 2011 and the launch of 'Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy' - Media

Rare Disease Day and the launch of RDUK’s ‘Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy’ succeeded in generating a good amount of media coverage in both national and local news.

Newspaper Articles

‘Rare Diseases: Together We Are Many’ – A 16 page colour supplement in The Independent, 28th February 2011

‘Rare Diseases: Alstrom Syndrome’ –The Telegraph Online, 28th February 2011, featured a story on a child with Alstrom syndrome and the opening of the UK’s first rare disease centre in Birmingham and a link to RDUK.

‘1 in 4 cancer cases missed: GPs send away alarming numbers of patients, delaying vital treatment’ - Daily Mail Online, 28th February. This article mainly focussed on diagnosis of cancer but did include a box on rare diseases with a mention of RDUK and the report.

‘Mum describes difficulties of daughter’s illness for rare disease day’ – Bromley News Shopper, 28th February 2011

‘Genzyme staff bake cakes in aid of unusual sufferers’ – Haverhill Weekly News. 28th February 2011

‘Brave Ruth, 16, speaks out to help others with rare illnesses’ - Derby Telegraph, 5th March 2011

‘Little Merry James battles incurable illness’ - Newcastle Chronicle, 7th March 2011

‘Crewe organisation helps to shape quality of care for people with rare diseases’ – Crewe Chronicle, 16th March 2011

‘Mother’s Assembly disease campaign’ – South Wales Guardian, 31st March

There were also articles in Research Fortnight, the Herald Express and The Munster Express.

Radio

BBC Radio 5 Live, 1st March – Melissa Hillier, Manager of RDUK, spoke with Jayne Hughes from Amy and Friends on Gabby Logan’s health show.

BBC Radio West Midlands - Melissa spoke again about rare diseases alongside Bethany Stokes who has mastocytosis.

Radio Newcastle

Radio Ulster