• info@haemophiliawales.org

Who Are We?

Haemophilia Wales provides information, support and advocacy to everyone with Haemophilia, Von Willebrands and other bleeding disorders, including their families and carers. In Wales there are approximately 900 people with an Inherited Bleeding Disorder, Haemophilia is a lifelong condition it is therefore important that you and your child learn about the condition in order to enjoy a healthy life.

Haemophilia is treatable and a child born with Haemophilia in Wales can look forward to a normal life expectancy and an excellent quality of life.

 

Our Vision

To ensure that we have choice in the care we receive and a voice for everyone with a bleeding disorder in Wales and ultimately a cure.

 

Our Mission

– To provide Information, Support and Advocacy for everyone with a Bleeding Disorder
– To ensure access to Comprehensive care and new treatments
– To campaign for an acknowledgement and compensation for Haemophiliacs infected with contaminated blood products in the 1970s & 1980s

Update on financial support

From 1 November 2017 support will be provided by a separate governmental organisation in each of the four UK devolved administrations, assistance is determined on the basis where an individual was infected with HIV and or Hepatitis C. All requests for assistance should be directed in the first instance to the dedicated offices list below.

Wales Infected Blood Support Scheme: https://wibss.wales.nhs.uk/about/
Tel: 02920902280

E mail: wibss@wales.nhs.uk

England: NHS Business Services Authority: https://www.nhsbsa.nhs.uk/england-infected-blood-support-scheme
Tel: 0300 330 1294
Email: nhsbsa.eibss@nhs.net

Northern Ireland: Northern Ireland Regional Business Services Organisation : http://www.hscbusiness.hscni.net/services/2876.htm
Tel: 02895 363817
Email: bso.ibss@hscni.net

Scotland – support for those infected in Scotland has been provided by NHS National Services Scotland since 1 April 2017
Tel: 0131 295 6754
Email: NSS.SIBSS@nhs.net

Upcoming events

Haemophilia Centres in Wales

Cardiff – 02920 743403 (Daytime) / 02920 747747 (Out of Hours)

Bangor – 01248 348008 (Daytime) / 01248 384384 (Out of Hours)

Swansea – 01792 200368 (Daytime) / 01792 205666 (Out of Hours)

Abergavenny – 01873 732372 (Daytime) / 01873 732732 (Out of Hours)

Contact Us

Address: Haemophilia Wales, 17 Alfreda Road, Cardiff, Whitchurch, CF14 2EH

Email: info@haemophiliawales.org

Facebook: /HaemophiliaWales

Recent Facebook Posts

5 days ago

Haemophilia Wales

Here are some photos from Haemophilia Wales' Christmas events 2018 for children and families. North Wales families went to see the Grinch at Llandudno Junction and then to Pizza Hut for a festive treat. South Wales families went to TeeRex Golf and soft play and met with Reptile man! We hope everyone had a great time! ... See MoreSee Less

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4 weeks ago

Haemophilia Wales

This Invitation is from the Infected Blood Inquiry: We are holding an Infected Blood Inquiry engagement meeting in Llandudno on Tuesday 4 December 2018. The meeting will be an opportunity for people affected, and their families, to receive an update on the work of the inquiry team.

We will be holding the following two sessions in Llandudno on Tuesday 4 December 2018:
Session one: 11.00am - 13.00pm (arrive from 10.30am)
Session two: 2.30pm - 4.30pm (arrive from 2.00pm)
Available spaces: 20 people per session

If you would like to attend one of these sessions, please confirm your attendance by 5pm on 26 November by emailing or phoning the Engagement team (please see details below) with your name, contact number, chosen session and the names of any additional guests you would like to bring. Once confirmed, you will receive a confirmation with the venue details. Please do not book travel without this confirmation. Places will be issued on a first come, first served basis.

We have attached the Inquiry's expenses guidance, which I encourage you to read as it covers all aspects with regards to claiming any expenses you may incur. Prior agreement for certain expenses must be obtained before any bookings are made. The attached guidance highlights where this is the case. Receipts would be required to support any claim you might make. Please note that it will not be possible to refund your expenses until after the meeting has taken place.
Please note that this engagement meeting is for people who live in North Wales and are close enough to travel to Llandudno but be reassured we will be holding additional meetings across the UK as we have detailed on our website. Our intention is to ensure that everyone who wishes to has the chance to attend a meeting.

Kind Regards
Leah Begley
Senior Engagement Officer
Infected Blood Inquiry

Email: contact@infectedbloodinquiry.org.uk
Freephone: 0808 169 1377
Address: Fleetbank House, 1st Floor, 2-6 Salisbury Square, London EC4Y 8AE
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