Virtual Public Genomics Café: Nov 19th, 11am


Are you affected by a rare or genetic condition? Are you a member of the public interested in finding out more about genomics and health? Join us for a Virtual Genomics Café! This initiative is being run by Wales Gene Park in collaboration with Genomics Partnership Wales. November’s café will feature relaxed talks from guest speakers on:

  • An Introduction to Genomics & Health
  • Surviving Shielding During Covid: experiences from the Rare Disease Community
  • An overview of the Cross-Party Group for Rare, Genetic & Undiagnosed Conditions
  • The National Genomics Estates Strategy in Wales for Genomics Partnership Wales & the Precision Medicine Initiative

The Virtual Café will be a relaxed, informal opportunity to meet others and find out about new advances in the area of genomic medicine in Wales. It will also be a chance for people to come together, be supported by others in their communities and let us know how we can better support those affected by rare or genetic conditions.  The café is FREE to join via Zoom, but you will need to register via Eventbrite to receive the joining link and instructions (you will also need to set up a free Zoom account).

 Register for Virtual Cafe: https://tinyurl.com/y3bx464c

Don’t forget to bring your cuppa and a snack to enjoy during the café!

Further information: email walesgenepark@cardiff.ac.uk

 

Young People’s Virtual Public Genomics Café Thursday 29 Oct 2020, 6pm – 7.30pm


Are you a young person interested in finding out more about genomics and health, or affected by a rare or genetic condition? Join us for our first ever Virtual Genomics Café specifically for young people! This event is aimed at those in the 16 to 25 age group and is being run by Wales Gene Park with Genomics Partnership Wales.  At October’s café, hear talks from guest speakers on:

  • An introduction to genomics and health
  • Experiences of living with a genetic condition
  • How you can become more involved in genomics in Wales

The Virtual Café will be a relaxed opportunity to find out about new advances in genomic medicine in Wales and a chance for young people to meet, come together, and let us know how we can better support those affected by rare or genetic conditions.

The cafe is FREE to join via Zoom, but you will need to register via Eventbrite to receive the joining link and instructions (you will also need to set up a free Zoom account).

Register for Virtual Cafe: https://tinyurl.com/y73qgntx

Don’t forget to bring your cuppa and a snack to enjoy during the cafe!

Further information email walesgenepark@cardiff.ac.uk  

 

 

Wales Gene Park Annual Report 2019 – 2020


The Wales Gene Park Annual Report 2019 – 2020 is now available here

The report shows how Wales Gene Park has evolved and adapted to make the very most in Wales of the opportunities presented by genomics. A major part of what the Wales Gene Park does is to make genomic technologies available to biomedical researchers in Wales. We also create a seamless interface with the NHS, accelerating the appropriate development of new services in genomic medicine for patients. We involve patients and the public in the planning and execution of research and in service and policy development through an extensive programme of engagement. We promote understanding of the opportunities and challenges raised by genomics among health professionals, schools and colleges and the public through a wide portfolio of education activities. We are receptive to ideas, questions and comments. To get in touch please email: WalesGenePark@Cardiff.ac.uk

Mae’r fersiwn Gymraeg yr adroddiad blynyddol ar gael yma/The Welsh version of the annual report can be found here

 

 

Virtual public talk on Rare Cancers: 30th September 6.30 – 7.45pm


Around 1 in 5 people (20%) in the UK who have been diagnosed with cancer are thought to have a rare cancer. To mark Rare Cancer Day on 1st October, join Wales Gene Park and the Wales Cancer Research Centre to find out more about rare cancers, with short talks from expert speakers including clinicians, researchers and those affected by rare cancer. There will also be time for discussion and questions with our speakers.

This event is FREE to join via Zoom. Register via Eventbrite to receive the joining link and instructions:  https://tinyurl.com/yy9uotul

Further information: walesgenepark@cardiff.ac.uk

 

 

Virtual Public Genomics Cafe 17th Sept 2020, 11am – 12.45pm


Are you affected by a rare or genetic condition? Are you a member of the public interested in finding out more about genomics and health? Join us for a Virtual Genomics Café! This initiative is being run by Wales Gene Park in collaboration with Genomics Partnership Wales.

September’s café will feature talks from guest speakers on new and innovative projects and initiatives from the All Wales Medical Genomics Service, including hearing about setting up the COVID Dragon’s Heart Field Hospital, the introduction of video consultations for service-users during the pandemic, and the new Wales Infants and Children’s Genome Service (Wings).

The Virtual Café will be a relaxed, informal opportunity to meet others and find out about new advances in the area of genomic medicine in Wales. It will also be a chance for people to come together, be supported by others in their communities and let us know how we can better support those affected by rare or genetic conditions.  The cafe is FREE to join via Zoom, but you will need to register via Eventbrite to receive the joining link and instructions (you will also need to set up a free Zoom account).

Register for Virtual Cafe: https://tinyurl.com/y666tp8w

Don’t forget to bring your cuppa and a snack to enjoy during the cafe!

Further information: email walesgenepark@cardiff.ac.uk

 

Virtual Public Genomics Cafe: 30th July 11am – 12.45pm


Are you affected by a rare or genetic condition? Are you a member of the public interested in finding out more about genomics and health? Join us for a Virtual Genomics Café! This initiative is being run by Wales Gene Park in collaboration with Genomics Partnership Wales. Following the success of June’s COVID-19 café, this month will again focus on COVID-19 with new talks from guest speakers on different aspects of the pandemic, a tour of Genetic Alliance UK’s COVID-19 Information Hub and a chance to ask questions and shape future cafes.

The Virtual Café will be a relaxed, informal opportunity to meet others and find out about new advances in the area of genomic medicine in Wales. It will also be a chance for people to come together, be supported by others in their communities and let us know how we can better support those affected by rare or genetic conditions.  The cafe is FREE to join via Zoom, but you will need to register via Eventbrite to receive the joining link and instructions (you will also need to set up a free Zoom account).

Register for Virtual Cafe: https://tinyurl.com/ycxc83o5

Further information: email walesgenepark@cardiff.ac.uk

Launch of ‘Rare Reality of COVID-19’ Report & Patient Experience Survey


Launch of the ‘Rare Reality of COVID-19’ report:

Today Genetic Alliance UK has launched its report on the Rare Reality of COVID-19 for patients and families affected by rare and genetic conditions. The report presents findings from the EURORDIS Rare Barometer COVID-19 Experience Survey, and from Genetic Alliance UK’s weekly community meetings during the months of April, May and June 2020. People living with rare conditions have been placed under immense pressure by the COVID-19 pandemic. Access to appropriate support, information, care and treatments has become more difficult and levels of social isolation have been increased.

The recommendations hope to mitigate the negative impact of COVID-19 on people living with rare conditions and prepare the UK better to support our community in the case of another pandemic.

Are you affected by a rare condition or are you the carer for someone who is?

It is now more important than ever to complete Genetic Alliance UK’s Patient Experience Survey. This time it coincides with the development of the new rare disease framework – the policy that will guide rare disease services in the UK over the next few years. It is vital to get a good picture, now, of your experiences so that any changes can be tracked once the new framework comes in and hold governments to account. You can complete the survey here: https://bit.ly/patientexperience2020

If you have any questions, please email Emma: emma@geneticalliance.org.uk