I.H.S. Update 20th December 2016
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Many thanks from the I.H.S. 

The Irish Haemophilia Society would like to send a huge thank you to everyone that contributed their support this year. From volunteering at our events, to fundraising, presenting at conferences, donating, writing for our publications and sharing experiences, we would not be able to run this Society without you! The immense support, encouragement and involvement of our members allow us to continue running the the I.H.S in a way that is most beneficial for you, the members, and we are very appreciative of that. Roll on 2017, time to make some more memories!


Calendar of Events 2017

2017 will bring some changes to our events at the I.H.S.
May and June 2017 will see an action packed Father/Son and Mother/Daughter weekend at Lilliput Adventure Centre. 

 A memorial service will take place in late November and we are already looking forward to the Christmas party we have booked for next year!

We hope to see you all at some of these events throughout the year - more info to come! 


AGM 2017

Next year, our AGM will take place in Slieve Russell Hotel, Co. Cavan. Unlike previous years, we will have a buffet dinner and session on Friday evening to allow everyone to settle into the weekend. Please see below for a rundown of the preliminary programme.

Dates:  3rd - 5th March
Venue:  Slieve Russell Hotel, Cavan,
Preliminary Programme
Friday 3rd March
5:30pm – 7:00pm:                   Registration and Buffet Dinner
7:30pm – 9:00pm:                   Debate

Saturday 4th March
10:00am – 12:30pm:               Annual General Meeting
12:30pm – 13:30pm:               Lunch
13:30pm – 2:30pm:                 Research iPath 
2:30pm – 3:00pm:                   Coffee Break
3:00pm – 4:00pm:                   Lecture on New Developments in Treatment
4:00pm – 5:00pm:                   Open Forum with Haemophilia Treatment Centres

Sunday 5th March
10:00am – 11:00am:               Workshop on New Developments in Treatment
11:30am – 12:00am:               Coffee Break
12:00pm – 1:00pm:                 An update on Vietnam Or Inhibitors 
1:00pm – 2:00pm:                   Carriers 
2:00pm – 3.00pm:                   Lunch and depart



Haemophilia Lighthouse Project

eHealth Ireland is working to deliver an Electronic Health Record (EHR) for Ireland. As part of this, in 2016 eHealth Ireland is investing resources into 3 project areas known as the ‘Lighthouse Projects’ to build an understanding of the benefits of an EHR in the Irish healthcare system. These projects are in the clinical disciplines of Epilepsy, Haemophilia and Bipolar Disorder.
The haemophilia Lighthouse project will be led by Dr Barry White who is the National Haemophilia Director on behalf the National Haemophilia service of Ireland. This service is based in the National Coagulation Centre (NCC) at St. James’s Hospital and includes two other Comprehensive Care Centres; Our Lady’s Children’s Hospital Crumlin (National Paediatric Service for Haemophilia) and Cork University Hospital (which provides a comprehensive service for adults and children).
The NCC is seeking to implement an integrated care solution on the basis that the deliverables will be openly shared. This integrated care record solution could /should illustrate both the challenges and potential of such change to underpin both healthcare service transformation and related EHR strategy/development across St James’s Hospital, the Dublin Midlands Hospital Group and indeed the wider health system across Ireland.
The project is aiming to achieve improvements across the key domains of healthcare delivery; quality and safety, patient experience and cost effectiveness.
The purpose of the haemophilia Lighthouse project is to leverage the existing haemophilia infrastructure to deploy an advanced e-health platform for haemophilia which will:
  • Improve haemophilia care
  • Provide an exemplar to demonstrate the benefits of full e-health deployment
  • Provide generic learning that can be deployed to services within the Irish Health System.
Key components of the solution
The key components of the e-health solution will be:
  • A patient portal to radically improve self-management (online choose and book, access to electronic record, advanced inpatient and home educational modules, ability for patients to report outcome measures in the home setting).
  • Deployment of full paperless EPR including diagnostic coding, medication management, clinical notes, order sets, integrated electronic care pathways, real-time performance reports, provider approval and reminders.
  • Data repository and analytics. A data repository will be deployed to collect data from all relevant sources and provide a base for data analytics.  An advanced analytics platform will be deployed to provide state of the art patient and populations analytics including predictive analytics addressing the key domain of healthcare patient experience, clinical outcomes, safety measures and resource utilisation.
Ruth Hunter Nolan
Quality Assurance Officer
National Coagulation Centre
For updates on all Lighthouse Projects go to:

Christmas Hospital Opening Hours


Christmas Recipe

Why not use the valuable Christmas time off to bake with the family? Get the kids involved make some ginger bread men for a festive treat!
You will need:
  1. 50g/8oz Cream Plain Flour
  2. 75g/3oz Butter, softened
  3. 75g/3oz Light Muscovado Sugar
  4. ½ teaspoon Bicarbonate of Soda
  5. 50g/2oz Golden Syrup
  6. 1 Egg Yolk
  7. ½ teaspoon Ground Cinnamon
  8. ½ teaspoon Ground Ginger
  9. Gingerbread Man Cutter 

How to:

  1. Cream butter and sugar together until light and fluffy.
  2. Add bicarbonate of soda, golden syrup and egg yolk and stir well.
  3. Sift the flour and spices into the bowl and mix with a wooden spoon until well combined.
  4. Shape into a ball and knead lightly on a work surface until smooth.
  5. Wrap and chill for about 30 minutes before using.
  6. Thinly roll out dough and use gingerbread cutters to cut out shapes.
  7. Place on lightly greased baking sheets, leaving a space between each.
  8. Bake at 180°C/350°F/Gas 4 for about 10-12 minutes until slightly risen and golden in colour.
  9. Transfer to a wire tray to cool.



Click Here to read our Winter Magazine 2017. The winter edition features articles from members and staff, upcoming projects events, quizzes and games for the kids and more.
The office of the I.H.S. will close at 3pm on Friday 23/12/2016 and will reopen at 9am on Tuesday 03/01/2017. In case of an emergency, please contact Brian O'Mahony on
087 2515325. 
Connect with Us
Irish Haemophilia Society
World Federation of Hemophilia
European Haemophilia Consortium
Consultative Council on Hepatitis C
National Haemophilia Council
Barretstown Camp
Get Ireland Active
Children in Hospital Ireland
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Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin

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