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AM welcomes plan to tackle rare diseases

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MID and West Wales Assembly Member, Rebecca Evans, has welcomed the launch of Wales’ first ever plan to tackle rare diseases – something that she has long been a campaigner for.

The plan, launched by Deputy Health Minister Vaughan Gething, sets out the Welsh Government’s expectations of the NHS in Wales to treat rare diseases for people of all ages, wherever they live and whatever their circumstances.

Mrs Evans – who has been a champion for rare diseases in the Assembly – called for the plan in a debate she led in the Assembly as a backbencher.

Mrs Evans said: “Rare diseases are actually not that rare. A rare disease is defined as any condition affecting fewer than 5 in 10,000 of the general population. There are over 6,000 known rare diseases, and they will affect 1 in 17 people at some point in their lives – that equates to 175,000 people in Wales.”

The plan sets out how the Welsh Labour Government will implement the UK Strategy for Rare Diseases. It sets out what actions health boards, NHS trusts and their partners in local government, the third sector, education and research and industry can take together to engage and co-ordinate specialised services, which may operate only at regional, national or even international level.

Mrs Evans added: “I warmly welcome the launch of this plan to tackle rare diseases. Working alongside the UK strategy we can take actions to increase prevention, improve diagnosis, and enhance coordination of care.”

The five areas identified to help achieve the aims of the plan are:

  • Empowering those affected by rare diseases
  • Identifying and preventing rare diseases
  • Diagnosis and early intervention
  • Coordination of care
  • The role of research.

Deputy Health Minister, Vaughan Gething said: “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.”

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Education

Carmarthenshire students celebrate A Level and A.S. results

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CARMARTHENSHIRE County Council wishes to congratulate all of the county’s students that are receiving their A-Level and A.S. results today, Thursday 18th August 2022.

Whilst this year has seen a return to exam-based results, following two years of assessment-based grading during the COVID-19 pandemic, students and teachers have still had to contend with the ongoing impact of the last 2 years.

A total of 98.6% of A Level students in Carmarthenshire achieved A*-E, which is higher than the 97.3% in 2019 when exams were last sat.

Across Carmarthenshire, a total of 40.1% of A level students have received A or A* this year, which is vastly higher than the 24.9% when exams were last sat in 2019.

After 2 years without examinations, students at AS Level also had the opportunity this year to show what knowledge they had learned and skills they had developed, through a combination of exams and assessments, applicable to different courses. 91.8 % of AS students in Carmarthenshire achieved A-E grades which, again, is higher than in 2019.

Cllr. Glynog Davies, Cabinet Member for Education and Welsh Language said: “Congratulations to every single student receiving their A-Level and A.S. results today. These young people and their teachers have worked extremely hard, within the uncertain climate that exists due to the pandemic, and they should be very proud, as am I, of their fantastic achievements.

“I would like to take this opportunity to thank the students, teachers and support staff of Carmarthenshire as well as their families for their hard work over the last two years.”

In a joint statement, Carmarthenshire County Council’s Chief Executive, Wendy Walters and Director of Education and Children’s Services, Gareth Morgans added: “Congratulations to our A-Level and A.S. students for their, well deserved, excellent results. The last two years have been very challenging for students, teachers, support staff, families and friends and we are grateful to everyone for their commitment and support to each other during this period.

“These young people are a credit to their schools and our county, and we wish them every success for the future.”

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Charity

Co op helps out two Llandeilo community volunteer groups

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LLANDEILO Co op store manager Chris Rees and Member Pioneer Christoph Fischer successfully secured Co op funding for two Llandeilo community groups: “Friends of Llandyfeisant Church” and the “Dinefwr Orchadeers”.

Friends of Llandyfeisant Church was set up to restore the beautiful Llandyfeisant Church on the Dinefwr Park estate. The volunteers want to bring this unused building back into use for the community. “We’re currently restoring the floor according to the Listed Buildings specification, which is costly and labour intense,” explains Dafydd Thomas from the group. 

“The church is no longer consecrated but it would be wonderful for many other events.”

The group has a busy Facebook page and many supporters, locally and from further afield.

The Dinefwr Orchardeers are a community volunteer group based at Dinefwr Home Farm, looking after a 3-acre orchard of heritage apple and pear trees. They hire out fruit milling and pressing equipment to local fruit tree / orchard owners, run a cider club and recently built a juicing room. The money will be spent on aprons and juicing equipment.

“We would love you to join or observe our weekly orchard management sessions” says Philip James. “You can learn, amongst other activities, to prune, harvest and juice.”

“At the Co op we’re proud to support local initiatives and projects,” says store manager Chris Rees. “We have three local causes every year who get 2% of money spent by members in the store on co op products, but we also can help with ad hoc projects.”

“We encourage local groups to come forward if they wish to apply for either type of funds,” says Member Pioneer Christoph Fischer. “My role in the co op is to liaise with community groups and lend them our support.”

To join or meet the Orchadeers, please call Philip on 01558 685746.

To become a member or volunteer with Friends of Llandyfeisant Church, visit their Facebook group https://www.facebook.com/groups/280218132732204 or email info@friendsofllandyfeisantchurch.org

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Education

St. Michaels School celebrates excellent A-Level results

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St. Michael’s pupils with their A-Level results

ST. MICHAEL’S School, Llanelli, is extremely pleased to announce another year of successful A-Level results, with 80.2% of all grades awarded either an A* or A grade.

The vast majority of pupils have earned a place at their chosen university to study courses such as Medicine, Veterinary Medicine and Economics.

This is the first year that traditional exams have resumed since the Covid-19 pandemic began with the majority of lessons in the first part of the A-Level being delivered online rather than in a classroom environment. This makes the results even more of an achievement considering the circumstances.

Headmaster Mr Benson Ferrari said: “We offer our sincere congratulations to our outgoing Year 13 class on the publication of their A-Level results, demonstrating that our pupils have worked so hard despite the challenges of returning to a conventional assessment approach.

“They approached the situation with resilience and dedication, which has resulted in grades that are truly representative of their ability.  I am confident that they will all go onto achieve great things at university and in their working lives.  

“We wish them the best as they move to this new and exciting stage of their education.  The preparation which St. Michael’s has provided will be built upon, along with our values and principles providing a lasting framework to tackle the challenges ahead.”

In 2020, St. Michael’s School was awarded The Sunday Times Welsh Independent School of the Decade and this was in part due to the excellent exam results that the school receives each year. 

St. Michael’s was also ranked 13th in The Times 2019 Co Ed League Table for UK Independent Schools, which was the last time that the results were published. The school hopes that this year’s results will continue to secure their place in the 2022 league table which will be published later this year.

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