Irish Haemophilia Society eZine: January 2019
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Final Call: AGM & Conference 2019

Thanks to all the members who have already booked their place for our AGM & Conference 2019, taking place in the Hotel Kilkenny, Co. Kilkenny over the weekend of March 1st to 3rd.

For those of you who have yet to book your place; the closing date for registrations is Monday, February 4th, 2019.

If you would like to attend this conference, we would advise you to book in as soon as possible to avoid disappointment.

If you would like to book your place please contact the office 01 657 9900 or return the booking form from your member’s AGM pack.

You can also find more info & book your place online by clicking this link.

See you all in Kilkenny! 

Outreach: Home, Hospital & School Visits for 2019
We would like to remind and reassure members of the support that the Society offers to persons with haemophilia, von Willebrand’s disease, related bleeding disorders and to their families on any issue which relates to their haemophilia, or their ability to deal with their medical condition.

Our Outreach Co-ordinator Lyndsey is the main point of contact for all our members who need support and assistance, be this queries regarding entitlements, advice, some support or a home, hospital or a school visit.

The Society is aware that not everyone can attend our events for a variety of reasons. However, this does not mean you do not need support. The I.H.S. can arrange a home visit at your convenience - remember, the staff are here for you!

It’s very important for us at I.H.S. to bring support directly to our members.

If you would like or think you would benefit from a home, hospital or a school visit in 2019, please contact Lyndsey on 01 657 9900 or

Parents Handbook
We are currently working on a ‘Parents Handbook’; this publication is specifically aimed at parents of children with haemophilia and other bleeding disorders, to provide some practical advice on available support, tips, and guidance to help parents in easy to understand language. 

As part of the booklet, we would like to include some real-life stories on what it’s like to live with a bleeding disorder from the perspective of parents, children with a bleeding disorder and siblings. It can be a paragraph, a page, some tips, or just about anything that you would have liked to share.

If you would like to contribute or have any questions about the Parents Handbook, please get in touch with Lyndsey in the office on 01 657 9900 or via email at

Update from Medical Social Work Department @ OLCHC
We’ve received an update from the Medical Social Work Department at Our Lady's Children's Hospital, Crumlin that Lynne McKeon in OLCHC will be changing teams from Monday, January 28th and will no longer be working with haemophilia families. However, Lynne McKeon’s replacement is her colleague Niall McDonald.
Niall will begin his new position from January 28th so there will be no gap in services provided by the Medical Social Work Department. Niall can be contacted on 01-4096356.
Hyde Square Update

We’re are delighted to announce that the apartment facility for members in Hyde Square has now re-opened.

Just to remind you all, the apartments are available to:

▪ People with haemophilia or related bleeding disorders from outside of Dublin, when attending St. James’s Hospital or Our Lady’s Children’s Hospital, Crumlin for treatment, for a hospital appointment or for a review clinic.

▪ An immediate family member, a spouse, a partner and/or child of the person with haemophilia or related bleeding disorder from outside Dublin, when attending St. James’s Hospital or Our Lady’s Children’s Hospital, Crumlin for treatment, for a hospital appointment or for a review clinic, or while a family member is an in-patient.

If you would like to make a booking, please contact Julia in the office on 01 6579900*.

For more info, please click here.

* A nominal fee of €10.00 per booking, per night will be levied to offset the cost of cleaning and routine maintenance.

AGM & Conference 2019: Preliminary Adults Programme

Venue: Hotel Kilkenny
Dates: Friday 1st to Sunday 3rd March 2019

AGM Packs have already gone out to members in earlier this month but for those of you who haven't seen it yet, here is the Preliminary Adults Programme for our 2019 AGM & Conference.

Friday March 1st 
17.30 – 19.00            Registration
19.00 – 20.00            Buffet Dinner
20.00 – 21.00            Presentation: An Update on Twinning 

Saturday March 2nd

10.00 – 12.30            Annual General Meeting 
12.30 – 13.30            Lunch 
13.30 – 14.30            Novel Therapies 
14.30 – 15.45            An Open Forum with the Comprehensive Care Centres
15.45 – 16.15            Coffee Break
16.15 – 17.00            An Update on the iPATH Project
17.00 – 19.15            Family Time
19.15 – 23.00            Gala Dinner 

Sunday March 3rd

10.00 – 11.30            The Future of the Society in a Changing Environment
11.30 – 12.00            Coffee Break 
12.00 – 13.00            Orthopaedic Surgery 
                                        - OR - 
12.00 – 13.00            New Developments – Q&A
13.00 – 14.00            Lunch and Depart

Volunteer With I.H.S.
We’re owe a huge debt of gratitude to our fantastic team of volunteers & we’re always happy to add to the team!

Would you like to be part of helping make 2019 a memorable year?

We’ve a fantastic team of I.H.S. volunteers but we’re always happy to add to this merry band.

Would you be interested in getting involved in volunteering with the I.H.S? We are looking for people of all ages, all backgrounds and all walks of life to volunteer with us at our events!

Do you enjoy working with kids? Are you good at arts and crafts? Are you a good photographer? Do you have a hobby or skill that you could teach to others? If so, we would love to hear from you!

Click here for more info or call us in the office on 01 657 9900 or email us at

Dates for Your Diary



AGM & Conference 2019
Date: Friday 1st to Sunday 3rd of March
Venue: Hotel Kilkenny, Kilkenny


Von Willebrand’s Information Day
Date: Saturday, April 13th
Venue: Midlands Hotel, Portlaoise

World Haemophilia Day Event
Date: Wednesday, April 17th
Venue: TBC


Father & Son(s) Overnight
Dates: Saturday May 18th & Sunday, May 19th
Venue: Lilliput Adventure Centre, Westmeath


Ageing Conference
Date: Friday 28th to Sunday 30th of June
Venue: Killeshin Hotel, Portlaoise, Co. Laois


Mild Haemophilia Information Day
Date: Saturday, July 20th
Venue: Killashee Hotel, Naas


Newly Diagnosed Conference
Dates: Saturday 21st & Sunday 22nd September
Venue: TBC


October Conference
Date: Friday 18th to Sunday 20th of October
Venue: Carlton Shearwater, Ballinsloe, Galway


Haemophilia B Information Day
Date: Saturday, November 9th
Venue: Hotel Kilkenny, Kilkenny

You can keep up to date with the latest I.H.S. info on Facebook & Twitter.
Medicinal Product Shortages Update:

Following our notice in December regards a shortage of Cyklokapron Tablets 500mg (tranexamic acid tablets) due to manufacturing delays, which is affecting multiple countries, we have received an update from St. James's Hospital that they expect the shortage to continue until the second quarter of 2019.

For more info, please follow the link here
Winter Magazine 2018
Click Here to read our Winter Magazine 2018. The winter edition features a host of great articles from members and staff, news, upcoming projects and events, quizzes and much more.

If you enjoy writing and would you like to contribute an article for the I.H.S., please contact Barry in the office or email

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GDPR is the EU’s new privacy law and affects every organisation using personal data including the Irish Haemophilia Society.

If you no longer wish to receive communication from us or wish to be removed from our database, please let us know and we will remove your details.

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
Health Service Executive
Citizens Information Bureau 
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