Genomics Partnership Wales

12/03/2025

The latest Genomics Partnership Wales Newsletter is now available to read!

In our March 2025 edition, we will be speaking to Sharon Takata, Facilities Lead at the Canolfan Iechyd Genomig Cymru.

We also hear from Sounding Board member, Georgina, on her new role as a PPIE member of our Programme Board.

In addition to this, our Head of Programme Michaela John discusses her recent visit to Singapore and we take a look at some of the exciting cross- partnership events coming up.

You can read the latest issue here: https://ow.ly/wehS50Vgr9O and sign up to receive future issues directly here: https://ow.ly/JKh850Vgr9K

28/02/2025

To mark 2025, Members of our Sounding Board have shared their own experience with rare conditions.

This is in the hope that others will feel more empowered to tell their own story and to persevere in gaining a diagnosis and the appropriate support.

Rare Disease Day is the globally-coordinated movement working towards equity in social opportunity, healthcare, and access to diagnosis and treatment for people living with a rare disease

Find out more: https://ow.ly/e8lg50V7CV7

18/02/2025

Cardiff and Vale University Health Board is leading the UK arm of a global trial that could improve treatment options for people living with a rare and life-threatening genetic condition.

X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) is caused by an alteration on the X chromosome and mostly affects boys. It causes symptoms such as missing or abnormal teeth, sparse or thin hair and a lack of sweat glands, which increases the risk of overheating and life-threatening complications. There are no curative treatments for XLHED, but global clinical trial Edelife is researching a new treatment that could lead to improvements in treatment options.

There are 10 centres across Europe and the US taking part and the University Hospital of Wales is the only centre in the UK, reflecting Wales’s ambition to become a world leader in genomics.

Read more about Edelife here: https://orlo.uk/RwDau

Health and Care Research Wales

11/02/2025

Wales Gene Park Public Health Wales Great to see the fantastic genomics work in Wales being showcased today!!

On International Day Of Women And Girls In Science, we celebrate the incredibly valuable contribution of women within the healthcare science workforce at Cardiff and Vale University Health Board.

Today marks the 10th anniversary of this celebration, which acknowledges the critical role women and girls play in STEM subjects and recognises the need for supporting the career development for future generations of women looking to enter these fields.

10/02/2025

Last week, our Head of Programme Michaela John attended a two-day workshop in Singapore on 'Mainstreaming genomics for precision population health', alongside colleagues from Welsh Government, Public Health Wales, All Wales Medical Genomics Service and Cardiff University.

Whilst there, Michaela gave a presentation on the ‘Genomics Infrastructure Across The UK’ and engaged in discussions on how the UK and Singapore can work together to share learning and development opportunities.

29/01/2025

Today and tomorrow, we're at the Festival of Genomics and Biodata at ExCel, London!

Join us on Stand 164 to learn more about how Wales is leading the way in the genomics field and what this means for patients and the population

There are also several industry experts from Wales giving talks on their areas of expertise, find out more: https://ow.ly/uLBf50UOEik

22/01/2025

One week to go!

The Festival of Genomics & Biodata is just around the corner!

Genomics Partnership Wales will be at ExCeL London from 29th–30th January with our partners All Wales Medical Genomics Service, Wales Gene Park and Public Health Wales Pathogen Genomics Unit at stand 164.

Come and see us to find out how Wales is leading the way in genomics!

Find out more: https://ow.ly/ix1v50UGPK0

16/01/2025

Today, we were pleased to welcome the Secretary of State for Wales, Rt Hon Jo Stevens MP, to the Canolfan Iechyd Genomig Cymru.

During her visit, she met with leading experts in precision medicine to learn how their work is advancing patient care and improving the health of the Welsh population.

This followed a discussion at the Life Sciences Hub Wales with key decision-makers from the life sciences industry, as part of her ongoing initiative to promote economic growth

Wales Gene Park Public Health Wales Advanced Therapies Wales Cardiff and Vale University Health Board Cardiff University

10/01/2025

Genomics Partnership Wales are attending the Festival of Genomics & Biodata at ExCeL London from 29th – 30th January 2025, alongside our partners: All Wales Medical Genomics Service, Wales Gene Park and Public Health Wales Pathogen Genomics Unit.

Join us at stand 164 to discuss the ground breaking genomics work taking place in Wales and how it's transforming healthcare for the Welsh population and beyond.

Save the Date: 29th – 30th January 2025 at ExCeL London.

05/12/2024

Wales Gene Park Christmas Genomics Café!

Are you interested in finding out more about genomics and health or rare and inherited conditions?

Whether you’re personally affected or simply curious, join us for a relaxed, festive event!

Thursday, 12th December - 11am - 12.45pm via Zoom

Talks will include:

· Brussel Sprouts: "Yum" or "Yuck"?

· Genomics in 2024: Rewind

· Updates from Genomics Partnership Wales

· Christmas Quiz & more!

This event is free to attend and open to everyone.

RSVP here: https://ow.ly/IIqN50UkFYN

20/11/2024

Genomics plays a significant role in the future delivery of healthcare, helping us to understand more about illness and disease and develop targeted approaches to patient care.

The Strategic Workforce Plan for Genomics sets out a roadmap for the next three years, to support colleagues across NHS Wales in developing their genomic literacy.

We heard from our Senior Responsible Officer, Suzanne Rankin, on the importance of all colleagues, no matter their area of clinical practice, enhancing their skills in this area.

You can find out more about the plan here: https://ow.ly/GcA650UaQlN

15/11/2024

Today, on the final day of , we celebrated the launch of the Strategic Workforce Plan for Genomics, in partnership with Health Education and Improvement Wales - HEIW

The launch event focused on how improving genomic literacy amongst all staff contributes to the successful integration of genomics into service delivery

Thank you to everyone who joined us!

Learn more about the plan here: https://ow.ly/QrPa50U6X8m

Public Health Wales Advanced Therapies Wales Welsh Government

12/11/2024

11/11/2024

It’s ! Where Health Education and Improvement Wales - HEIW will be raising awareness amongst healthcare professionals of the benefits that genomics can bring to patient care.

Find out more here: https://ow.ly/cAN950U4in7

You can also join them tomorrow for a live webinar on Pharmacogenomics (1-1:30 pm) to discover how genomic testing can inform prescribing.

To join the webinar, click here: https://ow.ly/wINT50U4in6

07/11/2024

Today, we celebrated the signing of a Memorandum of Understanding (MoU) between several industry leaders, a promise to work together to push Wales to the global forefront of genomics expertise.

We were excited to welcome Cabinet Secretary for Health and Social Care Jeremy Miles MS/AS to the Canolfan Iechyd Genomig Cymru, to meet with those who have signed; Public Health Wales, Cardiff University, Cardiff and Vale University Health Board and Illumina, Inc., to see first-hand how Wales is leading the way in this area.

In partnership with Welsh Government and facilitated by Life Sciences Hub Wales and Genomics Partnership Wales, the MoU will support efforts to work collaboratively to improve the development of new technologies, clinical approaches and treatments, medicines, vaccines and services to support preventative care.

Read more:https://ow.ly/8xzR50U2cLf

24/10/2024

Yesterday, our Public and Patient Sounding Board met in person and online for their Autumn Consultation

Topics discussed included consent for use of patient data for research and genomics research strategy

Thank you to all colleagues who joined us from The All Wales Medical Genomics Service and Wales Gene Park for a fantastic day!

More information on the output of these consultations can be found on our website:

https://ow.ly/pKBj50TRHr5

10/10/2024

The new and improved Genomics Partnership Wales Newsletter is now available to read!

In our October 2024 edition, we’ll be speaking to Liz Merrifield, Information Governance Lead at Wales Gene Park on her career so far.

We also hear from Sounding Board alumnus Ian Thomas, on his experience of living with genetic haemochromatosis.

In addition to this, we take a look back at some of the exciting cross- partnership events and updates that have taken place over the past few months and share what's coming up

You can read the latest issue here: https://ow.ly/3maH50TIFIb and sign up to receive future issues directly here: http://eepurl.com/hrAJRj

27/09/2024

The QuicDNA liquid biopsy clinical trial has now been rolled out to six health boards across Wales

This incredibly exciting development means that many more patients will now have access to cutting- edge technology which could transform their cancer diagnosis journey and treatment 🧬

Read more here:

QuicDNA project expands across Wales, revolutionising lung cancer diagnosis In a significant breakthrough for lung cancer diagnostics, the QuicDNA study has now reached a major milestone, expanding…