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Irish Haemophilia Society eZine: February 2019
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Talking Red Conference
 
We are delighted to be collaborating with the UK Haemophilia Society two events in 2019, the first of which is the ‘Talking Red Information Day’ and takes place in the NICVA, 61 Duncairn Gardens, Belfast BT15 2GB on Saturday June 22.

We will have speakers from Ireland and the UK and topics will include menstruation, pregnancy, treatment options, genetic counselling, family support and the emotional impact of living with a bleeding disorder. 

Please note, there is no charge to attend this event. If you are interested in attending, please contact Aoife in the office on 01 6579900 or via email at aoife@haemophilia.ie

von Willebrand’s Disease (VWD) Information Day 2019
Date: Saturday, April 13 2019
Time: 12 Noon - 5PM
Venue: Midlands Hotel, Portlaoise

The Irish Haemophilia Society are pleased to announce that an information day for people with von Willebrand’s Disease (VWD) will take place on Saturday, April 13th in the Midlands Hotel, Portlaoise. 

This information day will give people an opportunity to gain a better understanding of VWD and the treatments available and an opportunity to get answers to all those unasked questions. 

Please note that no charge is applicable on the day.

If you would like to attend this information day, please contact Aoife in the office on 01 6579900 to book your place, or you can book in online here
 

VHI Women’s Mini Marathon 2019
Registration Now Open


This year’s VHI Women’s Mini Marathon will take place in Dublin on the Bank Holiday Sunday, 2nd June 2019 at 2pm. Online registration is open from the 28th February, so don’t delay register today!

Visit vhiwomensminimarathon.ie to register online or for postal entries fill out an entry form which will be printed in the Evening Herald every Wednesday and Saturday from early March.

So if you have a bleeding disorder or if you are the mother, sister, daughter, niece, cousin or friend of an adult or child living with a bleeding disorder, now is your chance to show your support by taking part in this year’s VHI Women’s Mini Marathon to raise funds for the I.H.S. 
                   
Remember you must register with the event organisers to ensure you have get your race number to allow you to take part on the day and to receive your commemorative medal for this female only event.

To fundraise in aid of the I.H.S. and receive your I.H.S. t-shirt, sponsorship card and details on how to set up a fundraising page online (optional) please contact Nina on 01-6579900 or email nina@haemophilia.ie

Thank You
 

World Haemophilia Day 2019
 
The I.H.S. will once again be active in celebrating World Haemophilia Day (WHD) on April 17th. 

This year, the I.H.S. has joined with Royal College of Surgeons (RCSI) in Dublin for a symposium in the RCSI, entitled ‘Haemophilia – The Future is Now - New Approaches to an Ancient Condition’. 

‘Light Up Red'

Following the success of the ‘Light Up Red’ last year, a series of prominent buildings and landmarks in Ireland will join others across the globe in lighting up red for WHD – including Cork City Hall, The Capitol Building in Cork City, The Dublin Convention Centre, and The Mansion House, Civic Offices and Smithfield Square in Dublin. 

EHC World Haemophilia Day Celebrations in Dublin

The European Haemophilia Consortium (EHC) World Haemophilia Day celebrations will take place in Dublin this year - the day before on April 16th. 

The event will kick off a series of year-long celebrations to mark EHC’s 30th anniversary and it will be an opportunity to reflect on how the organisation and the European bleeding disorder community have evolved in the last 30 years; review current priorities and look at challenges ahead. 

Registrations are now open and can be done on-line here and here you can consult the draft programme.

Understanding Gene Therapy 

With our Annual Conference taking place this weekend, one of the major topics will be Novel Therapies, and we have a new Publication – an Update on Novel Therapies - available too. 

A major area of development in Haemophilia is in Gene Therapy. Several clinical trials are underway for both FVIII and FIX. Indeed, it is our clear expectation that some people with haemophilia here in Ireland will have an opportunity to participate in some of these clinical trials.

We understand that the science of Gene Therapy is complex and not always easy to communicate and with that in mind, we are delighted to be able to share a series of short videos on Gene Therapy.

The videos can be found in the 'Newsfeed' section of haemophilia.ie

These short professionally produced videos were commissioned by the European Haemophilia Consortium. The speakers were carefully selected, not only for their understanding of the topic, but for their clear ability to communicate this information.
 
We hope you enjoy these short presentations. We would very much welcome your feedback and comments.

Brexit
 
We have been conscious of the concern of many members about possible disruption to factor supply due to Brexit.

We have been working diligently through the Haemophilia Product Selection and Monitoring Supply Board to ensure there are no disruptions to supply whatever happens with Brexit. Companies will now be maintaining in Ireland a minimum of five months’ supply of the major products used here and supply routes have been altered to ensure that factors are imported directly from Europe and not from the UK or by UK land bridge.
 
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.
 

Dates for Your Diary

2019


March: 

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

April:

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

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

May: 

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

June: 

Talking Red Conference
In conjunction with the UK Haemophilia Society 

Date: Saturday June 22nd
Venue: NICVA, Belfast BT15 2GB

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

July: 

Family Adventure Overnight
Dates: Saturday 13th & Sunday 14th July
Venue: Lilliput Adventure Centre, Westmeath

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

September: 

Newly Diagnosed Conference
Dates: Saturday 21st & Sunday 22nd September
Venue: The Westgrove Hotel, Clane, Co Kildare

October: 

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

November: 

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.
GDPR

The introduction of General Data Protection Regulation (GDPR) came into effect on 25th May, 2018.

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.

 
Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review 
2019 – Issue 1

The Society has adapted a publication compiled by the European Haemophilia Consortium to produce a comprehensive update on ‘Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review’. 

This document, a first issue of 2019, is designed to be informative for both people with bleeding disorders and health care workers. It is available to download from the from here.

If you would like a hard copy, please get in touch with us on 01 657 9900. 
Board Update

Following a meeting of the I.H.S. Board in March, Ms. Aislinn Farrelly has assumed the role of Treasurer, following Ger O’Reilly stepped down from the board after 14 years. 

Thanks to Ger for all his work and we wish him luck in the future. 

We’d also like to wish Aislinn all the best with her new role. 
Connect with Us
LINKS OF INTEREST
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
Irish Health.com
Citizens Information Bureau 
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Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin
Ireland






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