• 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

The next Cross Party Group Meeting will be on Tuesday 5th February 12-2.30pm at the Pierhead Building (next to the Assembly) Cardiff Bay CF10 4PZ. Please contact us to confirm your attendance for this meeting and the Inquiry meeting on 7th March in Cardiff.

David Thomas, Haemophilia WalesTrustee and representatives from other groups around the UK attended a meeting with Jackie Doyle Price on 21st January regarding an interim agreement on financial support. This is the update:

The group met Jackie-Doyle Price, and David Lidington (Cabinet Office Minister) joined the meeting as well.



Both Ministers listened attentively as the group set out the moral case for action and six principles for reform to alleviate financial hardship during the Inquiry:



- No reliance on means testing and income top-ups

- No geographic variation

- No bereaved partner, bereaved parent or carer should suffer financial hardship

- People infected who are also bereaved should be recognised in their own right as both an infected person and a bereaved person

- People bereaved as children and people infected who were previously refused assistance should not be forgotten

- No-one should be worse off and no-one infected should receive less than someone affected



The group asked for action by 30 April when the Inquiry's hearings start. Jackie Doyle-Price agreed to see what can be done.



After the meeting, Jackie Doyle-Price's and David Lidington's senior officials sat with the group and said they'll work together, and with officials in Belfast, Cardiff and Edinburgh, so that ministers are in a position to take decisions within the timescale set out by the group.



The group will be following this up with DH and Cabinet Office officials over the next weeks
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1 month 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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