Are you a member of the cancer community? Do you feel the science of cancer could be better explained? Could you provide feedback on our new resources?

Then get involved in our Unique You project ! Cancer researchers at Cardiff University need your help to test tools to be used with the cancer community at public events. We want to simplify the science of cancer and have created new resources to help people understand cancer risk factors and a new cancer test.

Can YOU help us test the cancer resources and provide feedback at our workshop?

Thursday 15th September, 3.15 – 4.45pm, Grange Pavilion, Cardiff CF11 7LJ. Refreshments provided. Book here.

Expenses are available for your time and travel. Please note: expenses for attending the workshop are £20; travel expenses are a maximum of £9 (45p per mile for a maximum of 20 miles, round trip).

If you need more information please contact: uniqueyou@cardiff.ac.uk

There are a limited number of places available for this workshop. If you are unable to book a place, please email uniqueyou@cardiff.ac.uk to add your name to the waiting list. Thank you.

September’s café will feature relaxed talks including:

• Genetics & Exercise – Can Your IL-6R Gene Influence Your Exercise Choices? Dr Richard Webb, School of Health Sciences, Cardiff Metropolitan University
• A Personal Experience of a Rare Condition Rare Disease Advocate
• Supporting those with Undiagnosed Conditions in Wales: the new SWAN Clinics Initiative Dr Ian Tully, All Wales Medical Genomics Service
• And more…..

All welcome – FREE to attend

Register for Virtual Café: https://rb.gy/7svzxj

July’s café will feature relaxed talks including:

• Enabling Diagnosis through Genomic Research Dr Karen Reed, Wales Gene Park
• A Family’s Experience of the Rare Condition Neurofibromatosis type 1 (NF-1) Clare Giles, Rare Disease Advocate
• The Impact of Rare Disease Through a Lens Ceridwen Hughes, Same But Different
• A Personal Account of Thalassaemia Kyriacos Kanias, Rare Disease Advocate

All welcome – FREE to attend

Register for Virtual Café: https://rb.gy/34qeb5

For further information: walesgenepark@cardiff.ac.uk

Cutting-edge Biology: Teachers’ Genetics & Genomics CPD

9am – 3.45pm (talks start 9.30am), 23 June 2022

Cardiff Metropolitan University, Llandaff Campus, Cardiff CF5 2YB

Join Wales Gene Park, Cardiff Metropolitan University and Techniquest to learn more about the latest advances in the fast-moving field of genetics and genomics. Bring cutting-edge information to your secondary teaching with expert talks and interactive sessions. We are running a one-day Genetics & Genomics CPD event for teachers, funded by STEM Learning. Sessions include:

• Nutrigenomics & Epigenomics
• A Bioinformatics Workshop
• Analysing the Covid-19 Genome in Wales
• Tremolo, a brand new podcast drama about genetics for post-16 students
• A lab session on identifying SNPs associated with the genetics of taste, with stations including microscopes, measuring DNA, gel electrophoresis & interpreting results
• A discussion on genetics & ethics, including areas such as sequencing genomes and consent
• Opportunities offered by Cardiff Metropolitan University to prospective students

Funding: this course is subsidised by STEM LEARNING Ltd.

There is NO COST and teachers will be eligible for a £165 ENTHUSE bursary. To apply go to: https://www.stem.org.uk/cpd/512394/teachers-wales-only-cutting-edge-biology-genetics-genomics-cpd-teachers

Lunch and refreshments provided

Further information please contact: walesgenepark@cardiff.ac.uk

We would like to invite you to a virtual meeting of the CPG on Rare, Genetic and Undiagnosed Conditions hosted by Mike Hedges MS on Wednesday 18 May, 12:00-13:30 via Zoom.

The Wales Rare Disease Action Plan will be launched at the meeting; setting out how the Department of Health and Social Care and delivery partners will implement the UK Rare Diseases Framework in Wales. The Action Plan will address the four priorities set out in the UK Rare Diseases Framework:

• Priority 1: helping patients get a final diagnosis faster
• Priority 2: increasing awareness of rare diseases among healthcare professionals
• Priority 3: better coordination of care
• Priority 4: improving access to specialist care, treatments and drugs

The meeting will also broach some of the key barriers limiting access to diagnosis in the UK and consider the recommendations identified in  Genetic Alliance UK’s Good Diagnosis report which aim to address these barriers.

We will be hearing from:

– Natalie Frankish, Lead on the Good Diagnosis Project at Genetic Alliance UK

– Claire Swan, Parent Representative at SWAN UK

– Graham Shortland, Chair of the Wales Rare Disease Implementation Group

Members of the rare condition community will be attending this meeting including people living with rare conditions, members from the pharmaceutical industry and the organisations responsible for implementing the Action Plan.

Booking via: eventbrite

Please ask your MS to register interest in the Wales Cross Party Group meeting using our email template. You can personalise it to add information about yourself.

This meeting will also host the AGM for the Cross Party Group on Rare, Genetic and Undiagnosed Conditions. If you are interested in becoming a member of the CPG, please contact rachel.clayton@geneticalliance.org.uk.

Please RSVP to rachel.clayton@geneticalliance.org.uk for more information on the meeting.

Interested in having your voice heard?

We’re looking to recruit individuals with a range of experiences to join our Sounding Board! We know the issues surrounding genomics are complex and want to work with members of the public, to help us shape the future of Genomics.

Join our Sounding Board for an opportunity to help shape policies, care pathways and research that will affect people with rare or inherited diseases, or those requiring genetic testing as part of their healthcare.

Please complete an Expression of Interest form on the Health and Care Research Wales website by the 31st of May, 2022.

Take a look at the full role description here 

Get involved with Undiagnosed Children’s Day 2022 on Friday April 29th!

To find out more about any of the activities email info@undiagnosed.org.uk

April’s café will feature relaxed talks including:

• Mini-guts for Cancer Research
  Angharad Walters & Becky Truscott, Inherited Tumour Syndromes Research Group, Cardiff University
• An update on the new All-Wales SWAN (Syndromes Without a Name) clinics
  Dr Graham Shortland, Rare Disease Implementation Group
• Involving Patients to Shape Genomics in Wales
  Genomics Partnership Wales
• An Update from SWAN UK Cymru & News of Undiagnosed Children’s Day 2022 Amanda Thomas, SWAN UK Cymru

All welcome – FREE to attend. Register for Virtual Café: https://rb.gy/indcss