• 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

4 weeks ago

Haemophilia Wales

Over 40 people attended the Cross Party Group Meeting on 25th June 2019. Mick Antoniw Chair of the CPG has written to Vaughn Gething, Minister of Health and Social Services at the Welsh Assembly asking for a meeting to discuss the disparity in Infected blood support across the UK. Welsh Government have confirmed that the UK Health Ministers will meet before the summer recess. Sir Brian Langstaff Chair of the Infected Blood Inquiry continues to press for parity of support across the UK, it was highlighted that 160 people across the UK have died since the Inquiry was announced on 11th July 2017 and that the current system of support is unacceptable for the duration of the Inquiry.

Inquiry Update : Lloyd Williams QC, Christian Howells and Watkins and Gunn who are representing Haemophilia Wales and Haemophilia Northern Ireland have attended all Public Hearings in London, Northern Ireland, Leeds and will be in Edinburgh for the next 2 weeks. Witnesses selected by Sir Brian Langstaff for the Cardiff Hearings at the Royal Welsh College of Music 23rd-26th July will have now been contacted. The Inquiry has 150 paralegals and 6-10 experienced Inquiry solicitors examining documents from Government departments and pharmaceutical companies and people will be summoned to give evidence if required. Sir Brian is reading all witness statements and he wants to hear all evidence. There is a balance between thoroughness and speed and he knows that time is of the essence.

Treatment : There are no issues relating to access of new Hepatitis C treatments and Haemophilia Clinicians in Wales do not have restrictions placed on them when prescribing new longer lasting Factor 8 and 9 treatments. The transfer of reserves from the Macfarlane to the Terence Higgins Trust in 2018 together with the Honeycombe and Wilson Legacies for Macfarlane Trust widows were discussed.
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