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: email@example.com
There are a limited number of places available for this workshop. If you are unable to book a place, please email firstname.lastname@example.org 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
The families of people with rare diseases may have to undertake a long journey to find a to find a diagnosis (often called a diagnostic odyssey); there may be ignorance of their condition and as a result their care may be uncoordinated and individuals might not have access to the best treatment options.
The Wales Rare Diseases Action Plan aims to address these concerns by helping patients get a final diagnosis faster and increasing awareness of rare diseases among healthcare professionals, therefore promoting better coordination of care and improving access to specialist care, treatment, and medicines.
It can be found via the NHS Wales Health Collaborative webpages as can further information about the Rare Diseases Implementation Group.
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: email@example.com
The Genomics Showcase 2021 Programme can be found here
The full report on the Genomics Showcase 2021 can be found here
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: firstname.lastname@example.org
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 email@example.com.
Please RSVP to firstname.lastname@example.org 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 email@example.com
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