Come and join the wider team and help guide the direction of Wales Gene Park as a patient and public representative on our Strategic Advisory Group. For more information about the role, reimbursement and how to apply – please take a look at the advert below:

Role Description

Patient & Public Representative, Strategic Advisory Group, Wales Gene Park

Wales Gene Park (WGP) is an infrastructure support group funded by Welsh Government through Health and Care Research Wales, hosted by Cardiff University. WGP is in its 17th year of consecutive funding from Welsh Government and forms an integral part of Genomics Partnership Wales, an initiative that is delivering the Welsh Government’s Genomics for Precision Medicine Strategy

WGP is recruiting a patient/public representative to join its Strategic Advisory Group. The appointee will attend quarterly meetings (planned to be virtual for the foreseeable future), actively and conscientiously participate in discussions and contribute to strategic developments of WGP, providing advice and reviewing progress against objectives. To fulfil this role, the appointee will need to keep up to date with issues affecting WGP such as developments in genomics in Wales.

Applications are welcome from individuals with a broad range of experiences:

  • direct or indirect experience (as an individual, family member or carer) of genetic testing and/or the process of informed consent for such testing
  • any interaction with the All Wales Medical Genomics Service
  • taken part in a precision or ‘personalised’ medicine trial, e.g. for cancer
  • direct or indirect experience (as an individual, family member or carer) of rare diseases such as Cystic Fibrosis, Huntington Disease, Tuberous Sclerosis
  • direct or indirect experience of living with/supporting children/adults with Developmental Delay disorders
  • are able to voice their opinions in a constructive manner
  • are able to listen to other perspectives and respect other viewpoints

The role will be reimbursed with an honorarium payment and travel expenses in line with Health and Care Research Wales guidance.

Please get in touch if you would like an informal chat about the role. Expressions of interest of no more than 500 words outlining your experience and motivations for applying for this role should be sent to Emma Hughes: emma@geneticalliance.org.uk by 1 March 2021.

Disgrifiad o’r Rôl

Cynrychiolydd Cleifion a’r Cyhoedd, Grŵp Cynghori Strategol, Mae Parc Geneteg Cymru

Mae Parc Geneteg Cymru yn grŵp cefnogi seilwaith wedi’i ariannu gan Lywodraeth Cymru drwy Ymchwil Iechyd a Gofal Cymru, a’i gynnal gan Brifysgol Caerdydd.Mae WGP yn ei 17eg flwyddyn o gyllid yn olynol gan Lywodraeth Cymru ac mae’n rhan annatod o Bartneriaeth Genomeg Cymru, menter sy’n cyflawni Strategaeth Genomeg ar gyfer Meddygaeth Fanwl Llywodraeth Cymru.

Mae WGP yn recriwtio cynrychiolydd cleifion / y cyhoedd i ymuno â Grŵp Cynghori Strategol WGP. Bydd y sawl a benodir yn mynychu cyfarfodydd chwarterol (y bwriedir iddynt fod yn rhithwir hyd y gellir rhagweld), cymryd rhan weithredol a chydwybodol mewn trafodaethau a chyfrannu at ddatblygiad strategol WGP, gan ddarparu cyngor ac adolygu cynnydd yn erbyn amcanion. Er mwyn cyflawni’r rôl hon, bydd angen i’r sawl a benodir gael y wybodaeth ddiweddaraf am faterion sy’n effeithio ar WGP fel datblygiadau mewn genomeg yng Nghymru.

Mae croeso i geisiadau gan unigolion sydd ag ystod eang o brofiadau:

  • profiad uniongyrchol neu anuniongyrchol (fel unigolyn, aelod o’r teulu neu ofalwr) o brofi genynnol a / neu’r broses o gydsyniad gwybodus ar gyfer profion o’r fath:
  • unrhyw ryngweithio â Gwasanaeth Genomeg Feddygol Cymru Gyfan
  • cymryd rhan mewn treial meddygaeth manwl neu ‘wedi’i bersonoli’, ee ar gyfer canser
  • profiad uniongyrchol neu anuniongyrchol (fel unigolyn, aelod o’r teulu neu ofalwr) o glefydau prin fel Ffibrosis Systig, Clefyd Huntington, Sglerosis Twberws
  • profiad uniongyrchol neu anuniongyrchol o fyw gyda / cefnogi plant / oedolion ag anhwylderau Oedi Datblygiadol
  • gallu i leisio eu barn mewn modd adeiladol
  • gallu i wrando ar safbwyntiau eraill a pharchu safbwyntiau eraill

Ad-delir y rôl gyda thaliad honorariwm a threuliau teithio yn unol â chanllawiau Ymchwil Iechyd a Gofal Cymru

Cysylltwch â ni i ofyn unrhyw gwestiynau neu gael sgwrs anffurfiol. Dylid anfon mynegiadau o ddiddordeb o ddim mwy na 500 gair yn amlinellu’ch profiad a’ch cymhellion i ymgeisio am y rôl hon at: Emma Hughes: emma@geneticalliance.org.uk erbyn 1 Mawrth 2021.