Your monthly digest from the I.H.S. 

Irish Haemophilia Society eZine: December 2019
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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 allows us to continue running the I.H.S. in a way that is most beneficial for you, the members, and we are very appreciative of that.

It was a big year we would like to thank you again for all your wonderful support in 2019, we really appreciate it.

Wishing you all a Merry Christmas and Peaceful New Year!

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Home Visits 2020



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 relating to their haemophilia, or their ability to deal with their medical condition.

Our Outreach Co-ordinator Robert 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.

For more information or to book a home visit in 2020, please contact Robert on 01 657 9900 or [email protected] (mailto:[email protected]) .

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EHC Inhibitor Summit 2020



The fourth EHC Inhibitor Summit took place again in the wonderful Barretstown. We were delighted to be involved again and a big thanks to all the I.H.S. staff & volunteers who made the weekend possible.

There are some great photos up on our website which capture the essence of the brilliant weekend:

Take a look here here ([link removed])

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AGM & Conference 2020

Slieve Russell Hotel, Co Cavan
March 6 - 8, 2020
AGM Packs will be going out to members in early January but before that, here is the Preliminary Adults Programme for our 2020 AGM & Conference.

Friday March 6th

17.00 – 19.00 Registration
19.00 – 20.00 Buffet Dinner

Saturday March 7th

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

Sunday March 8th

10.00 – 10.45 Twinning
10.45 – 11.30 An Update on the iPATH Project
11.30 – 12.00 Coffee Break
12.00 – 13.00 Focus on Lifestyle
13.00 – 14.00 Lunch and Depart

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Winter Magazine 2019

Click here to read our Winter Magazine 2019 ([link removed]) . The winter edition features a host of great articles from members and staff, news, important info on new treatments, upcoming projects and events, 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 [email protected] (mailto:[email protected])

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Hospital Opening Hours for the Christmas Period

National Coagulation Centre & H&H Assessment Unit – St. James’s Hospital

Monday 23 December 2019 - as normal (08.30 - 5pm)
Tuesday 24 December 2019 - No Clinics
Wednesday 25 December 2019 - closed
Thursday 26 December 2019 - closed
Friday 27 December 2019 - closed
Saturday 28 December 2019 - closed
Sunday 29 December 2019 - closed
Monday 30 December 2019 - closed
Tuesday 31 December 2019 - closed
Wednesday 01 January 2020 - closed
Thursday 02 January 2020 - as normal (08.30 - 5pm)
Friday 03 January 2020 - as normal (08.30 - 5pm)

The walk in assessment unit in H&H will operate as per out of hours and weekends with 24 hour cover. Out of Hours Service Phone: (01) 410 3132 (after 5pm Monday to Friday, and at weekends or bank holidays).

Patients who need emergency assessment or advice should phone the H&H Ward prior to attending, or alternatively contact St. James’s hospital via the main switchboard on 01 410 3000 and ask for the haematology SHO on call.

Cork Coagulation Centre - Cork University Hospital

Monday 23 December 2019 - as normal (08.30 - 5pm)
Tuesday 24 December 2019 - closed
Wednesday 25 December 2019 - closed
Thursday 26 December 2019 - closed
Friday 27 December 2019 - closed
Saturday 28 December 2019 - closed
Sunday 29 December 2019 - closed
Monday 30 December 2019 - Open (8.30 - 2.30pm)
Tuesday 31 December 2019 - closed
Wednesday 01 January 2020 - closed
Thursday 02 January 2020 - as normal (08.30 - 5pm)
Friday 03 January 2020 - as normal (08.30 - 5pm)

The Haematology Registrar is on call throughout the holiday period and can be contacted through the CUH switchboard at 021 454 6400.

Children’s Health Ireland at Crumlin

Monday 23 December 2019 - as normal (08.00 - 5pm)
Tuesday 24 December 2019 - emergencies only
Wednesday 25 December 2019 - emergencies only
Thursday 26 December 2019 - emergencies only
Friday 27 December 2019 - limited elective activity
Saturday 28 December 2019 - emergencies only
Sunday 29 December 2019 - emergencies only
Monday 30 December 2019 - as normal
Tuesday 31 December 2019 - limited elective activity
Wednesday 01 January 2020 - emergency only
Thursday 02 January 2020 - as normal (08.00 - 5pm)
Friday 03 January 2020 - as normal (08.00 - 5pm

FYI: The Haematology Oncology Service always remains open but the Haematology Oncology Day Unit & Service only operates Monday - Friday & closes for public holidays.

In the case of an emergency, please contact the hospital on 01 409 6100 and ask for the haematology registrar on call.

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Fundraising in 2019: Thank You for Your Support!

On behalf of the staff and board of the I.H.S. I want to thank all our members and their family and friends for the wonderful support we've received this year.

We would like to thank everyone who organised or took part in a fundraiser in aid of the I.H.S. and to all those who made kind donations and to those who contribute to our Planned Giving Appeal. Without your help there are many services and supports that we would be unable to provide to our members. Your support goes a long way to helping others and is very much appreciated.

If you would like to fundraise in aid of the I.H.S. in 2020, or would like to sign up to our Planned Giving Appeal, please contact Nina on 01-657 9900 or email [email protected] (mailto:[email protected])

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New Treatment Option for Prophylaxis in Severe Haemophilia A + Info Meetings

Emicizumab (brand name: Hemlibra) is a bi-specific antibody which binds to both activated FIX and FX and allows the coagulation cascade to continue, and the blood to clot, in the absence of FVIII. Hemlibra mimics the effect of FVIII and can be used as an option for prophylaxis for people with FVIII deficiency.

Hemlibra has been used in Ireland for the past year for people with FVIII inhibitors. It has now been licenced for prophylaxis in people with FVIII deficiency. There is existing clinical experience with Hemlibra in FVIII deficiency in Ireland as a number of people with haemophilia here participated in the clinical trial for Hemlibra in FVIII deficiency.

The Haemophilia Product Selection Monitoring Advisory Board (HPSMAB), in which the Society participates, recently completed a negotiation which has resulted in access to Hemlibra (Emicizumab) for people with severe factor VIII (FVIII) deficiency / Haemophilia A as an option for prophylaxis.

This means that every individual with severe FVIII deficiency will have the option to switch to Hemlibra or remain on extended half life FVIII (current treatment, which is Elocta). This will be an individual decision to be made following a consultation each person with haemophilia or parent will have with their comprehensive care centre.

More info is available here ([link removed])

Each person with FVIII deficiency or parent will have an opportunity to discuss their future treatment options with their comprehensive care team in the coming months but with the arrival of a new treatment option for prophylaxis in severe Haemophilia A, the I.H.S. has organised information meetings, in collaboration with the Comprehensive care centres in Dublin and Cork and the treatment centre in Galway.

If you would like to attend any of these meetings, RSVP with your chosen location to Aoife in the office on: 01 657 9900 or [email protected] (mailto:[email protected])

**PLEASE NOTE THE CHANGE OF VENUE IN CORK**

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I.H.S. Office Hours for Christmas

The office of the Irish Haemophilia Society will close for
Christmas at 3pm on Monday, December 23rd 2019 & will
re-open on Thursday, January 2nd 2020 at 9am.

In the case of an emergency, please call 01 657 9900 where
contact details for our emergency contact person will be
found.

Wishing you all a very Merry Christmas & a peaceful New
Year from the board & staff of the I.H.S.

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Hyde Square Apartments

Just to remind you all, that the apartment facility for members in Hyde Square 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.

To make a booking, please contact Julia in the office on 01 657 9900*.

For more info, please click here ([link removed]) .

* 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

2020

January

Hemlibra Info Meetings:

Cork
Date: Wednesday, January 8th 2020
Time: 18.30
Location: The Imperial, Cork

Dublin
Date: Monday, January 13th 2020
Time: 7pm
Location: Irish Haemophilia Society Office

Galway
Date: Wednesday, January 29th 2020
Time: 7pm
Location: Maldron Hotel, Sandy Road, Galway

March:

AGM & Conference

Dates: Friday, March 6th to Sunday, March 8th
Venue: Slieve Russell Hotel, Co Cavan

April:

World Haemophilia Day Event

Date: Friday, April 17th
Venue: TBC

Von Willebrand’s Information Day

Date: Saturday, April 13th
Venue: Castleknock Hotel, Dublin

May

Women & Bleeding Disorders Info Day

Date: Saturday, May 9th
Venue: Hodson Bay Hotel, Athlone, Co. Westmeath

June

Mother & Daughter Overnight

Saturday June 20th & Sunday, June 21st
Venue: Lilliput Adventure Centre

July

Father & Son(s) Overnight

Dates: Saturday July 4th & Sunday, July 5th
Venue: Lilliput Adventure Centre

Mild Haemophilia Information Day

Date: Saturday, July 18th
Venue: Killashee Hotel, Naas

August

Family Day Out

Date: Monday, August 10th
Venue: Dublin Zoo

September

Ageing Event

Date: Saturday, September 19th
Venue: TBC

October

October Conference

Dates: Friday, October 16th to Sunday 18th
Venue: Mount Woseley, Co Carlow

November

Haemophilia B Information Day

Date: Saturday, November 14th
Venue: Hotel Kilkenny

You can keep up to date with the latest I.H.S. info on Facebook ([link removed]) & Twitter ([link removed]) .
Bon Voyage!
Are you planning on jetting off for the Christmas break or New Years?

Be sure to be prepared with all the necessary documents and of course, the I.H.S travel card.

If would like a reminder of everything you will need click here for the necessary I.H.S. travel tips!

Or if you need a travel card sent out to you, give us a call on 01 657 9900 or email
[email protected] (mailto:[email protected])
New Independent Patient Advocacy Service Launched
The Patient Advocacy Service is a new independent, free and confidential service to assist people to make a complaint about the care they have experienced in public acute hospitals.

More info here ([link removed])
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.

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LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])

** World Federation of Hemophilia ([link removed])

** European Haemophilia Consortium ([link removed])

** Consultative Council on Hepatitis C ([link removed])

** National Haemophilia Council ([link removed])

** Barretstown Camp ([link removed])

** Get Ireland Active ([link removed])

** Children in Hospital Ireland ([link removed])

** Health Service Executive ([link removed])

** Irish Health.com ([link removed])

** Citizens Information Bureau ([link removed])
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Irish Haemophilia Society
Cathedral Court
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Dublin 8, Dublin
Ireland

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