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New plan to tackle rare diseases in Wales

Wales’ first ever plan to tackle rare diseases is launched today.

A rare disease is defined as a life-threatening or chronically debilitating disease, which affects five people or less per 10,000. Credit: Angelika Warmuth/DPA/PAImages

It sets out the Welsh Government’s expectations of the NHS in Wales to treat rare diseases for people of all ages.

A rare disease is defined as a life-threatening or chronically debilitating disease, which affects five people or less per 10,000. They can range from life-limiting illnesses to manageable conditions, which do not affect daily living. There are around 150,000 people affected by such diseases in Wales.

Examples include Sickle Cell, which is a disease arising out of genetic problems, and Spina Bifida - a disease arising out of deficiencies or exposures to substances during pregnancy.

"This is the first time Wales has developed a plan to improve the experiences of people living with rare diseases and it brings together a number of recommendations designed to improve coordination of care and lead to better outcomes for people.

To this end, we are keen to see real partnership across services, agencies, and above all between individuals living with rare diseases, their carers, patient organisations and the NHS.

Patients with these conditions can suffer greatly and we are determined to provide the best care we can for them. I expect this plan to make a real difference."

– Vaughan Gething, Deputy Health Minister

PISA chief: Wales 'too tolerant' of low education performance

The architect of the international PISA tests says Wales' education system is too tolerant of low performance.

Andreas Schleichler says the expectations Welsh education sets for its children are much weaker than in higher performing education systems.

There's no reason why you'd expect Wales anywhere near to Greece, which is what the PISA performance shows you.

It's been a fair degree of complacency if you compare that with other countries you know we wouldn't have the level of tolerance for low performance that we've seen in Wales.

– Andreas Schleichler

You can hear more in tonight's Y Byd ar Bedwar, which will be broadcast tonight at 9.30 on S4C. English subs are available.


'Be aware' warning of snow and ice for much of Wales

This image was sent to us from Pentre Ifan in Pembrokeshire. Credit: Pauline Boswell

The Met Office has issued a yellow 'be aware' warning of snow and ice for much of Wales.

It says there could be accumulations of up to 5cm on high ground and says there's the possibility of disruption to travel.

The areas affected are:

  • Carmarthenshire
  • Ceredigion
  • Conwy
  • Denbighshire
  • Flintshire
  • Gwynedd
  • Isle of Anglesey
  • Neath Port Talbot
  • Powys
  • Monmouthshire
  • Rhondda Cynon Taff
  • Merthyr Tydfil
  • Wrexham

The warning runs until 10am.

Study 'reveals north/south genetic divide in Welsh red kite'

A study of the modern red kite population in Wales has revealed a north/south genetic divide that runs along the Towy Valley.

In the 1930s only one breeding pair remained in Wales. Credit: Stephen Wilson/ PA Wire

This is one of the findings of a study of the genetic status of the red kite in Wales by Aberystwyth University postgraduate student Ilze Skujina.

The research was undertaken as part of a project to provide guidance on the long-term conservation of the red kite.

DNA was collected from feathers cast off by the birds.

The molecule acts like a bar-code and provides geneticists with information about the relations between populations and individuals.

I was not only able to reconfirm that the modern Welsh kite population still fall into a Northern and Southern groups (as had been detected in the 1980s using the single genetic fingerprint probe available at the time) but also detect a genetic difference between the older Central-Welsh and the relatively new Red kite population in Shropshire and Herefordshire

– Ilze Skujina, Postgraduate Student, Aberystwyth University
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