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TSCommunity In your region
In Wales
100,000 Genomes Project
officially launched in Wales
The 100,000 Genomes Project was officially
launched in Wales in February. Welsh Health
Minister Vaughan Gething and Professor Julian
Sampson from Cardiff University introduced the
UK-government-initiative at the Rare Disease Day
2018 reception at the Senedd in Cardiff. TSA
ambassador Marie James and her husband Perry
represented the TSA along with TSA Adviser Ellie
Russell.
The Project sequences whole genomes from NHS
patients, focusing on rare diseases, some common
types of cancer and infectious diseases. Its aim is to
create a new genomic medicine service for the
NHS, transforming the way people are cared for.
To find out more, contact Rhys Vaughan on 02921
847083or Gabriella Juma on 01291 841712, or
email 100k.genomeproject@wales.nhs.uk
Support clinics
TSC clinics take place every month at the University
Hospital of Wales in Cardiff.
To find out more or discuss a referral, contact
Ellie Russell
28 Summer 2018
In Northern Ireland
Is the Well-being Act working for you?
Carers Wales wants to find out how well the Social
Services and Well-being (Wales) Act 2014 is
working. The campaigning group has set up a short
online survey asking for carers’ experiences to help
ensure all Wales’s local authorities are fulfilling their Add your voice for a better
legal obligations. patient experience
To take the survey, go to
www.surveymonkey.co.uk/r/StateofCaring2018 By completing a short survey you can help improve
healthcare services throughout Northern Ireland.
The 10,000 Voices initiative has been launched by
the Public Health Agency and Health and Social
Care Trusts to introduce a more patient-focused
approach to services. It gives you an opportunity to
share your experience of using the NHS in Northern
Ireland and highlight what is important to you.
To find out more, go to www.10000voices.infoor
call 028 950 89827
Free support services
The British Red Cross in
Raising awareness
TSA Adviser Northern Ireland is offering
for Wales Ellie free support services for
Russell has been talking to healthcare students people aged 18 and over. These include support at
to raise awareness of TSC. She visited students home, community connecting and assisted
on health and social care courses at the discharge services, which are available in specific
University of South Wales and the Genetic areas.
Counselling course at Cardiff University to tell
To find out more, contact Independent Living
them more about the rare disease and the work Service Manager Elizabeth Boyd on 028 90 735352
of the TSA. or 07710 711170, or email
If you’d like Ellie to come and talk to healthcare elizabethboyd@redcross.org.uk
professionals or students near you, get in touch.
In your region TSCommunity
Epilepsy Action has moved
Epilepsy Action Northern Ireland has moved
premises. Its new contact details are as follows:
Clare Watson, Northern Ireland Manager
Epilepsy Action Northern Ireland
PO Box 2224, Belfast, BT1 9YU
Tel: 07885 778585(please note 028 9063 4942 is
no longer in use)
Email: cwatson@epilepsy.org.uk
Website: www.epilepsy.org.uk
To find the
contact details of
your local TSA
Adviser, go to the
back page
New Mobiloos
Three new
Mobiloos
have been launched in Northern Ireland and the
Republic of Ireland. The specially designed
facilities for people with disabilities aim to help
everyone enjoy outdoor events, knowing that
accessible toilets are available.
To find out more, go to www.mobiloo.org.uk
or call 0300 030 1255. If you would like to book
a Mobiloo for your event, email
info@mobiloo.org.uk
TSA SCAN 29