Your monthly digest from the I.H.S. 

Irish Haemophilia Society eZine: October 2019
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Exciting new therapy for haemophilia:
Emicizumab (Hemlibra)

Agreement has been reached for the provision of a new and innovative treatment for people with haemophilia, it was confirmed at the annual Irish Haemophilia Society members’ conference in October.

The new treatment, Emicizumab (Hemlibra), licenced by the European Medicines Agency, is a bi-specific monoclonal antibody which mimics the effect of the clotting factor VIII injections for patients with Haemophilia A. It will offer more protection against bleeding and, importantly, rather than requiring vein access, it is injected subcutaneously (under the skin) once a week or once every two weeks.

The product will be available to all people with the severe form of Haemophilia A which is the most common type of the condition.

It has been made available following an agreement with the Haemophilia Product Selection and Monitoring Advisory Board, which procures medications for haemophilia in Ireland. The board includes haemophilia specialists, the Irish Haemophilia Society and officials from the Department of Health.

For more info see here ([link removed]) or contact the office on 01 657 9900

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- Haemophilia B Info Day -



Saturday, November 16, 2019 | 12 Noon to 6PM
Venue: Hotel Kilkenny

The Irish Haemophilia Society are pleased to announce an information day on Haemophilia B in Hotel Kilkenny.

With so many new developments in the pipeline in relation to haemophilia B, we would encourage people to attend this information day and find out more about new developments in the treatment of haemophilia B.

If you would like to attend, please contact Aoife in the office on 01 6579900, or via e-mail [email protected] (mailto:[email protected])

Or, if you prefer, you can book in online here ([link removed]) .

Please note, there is no charge to attend this event.

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Our Autumn Magazine is out now!
Our Autumn magazine is out now and you should all have received a copy in the post, but if you would like to read the digital version, you can do so here ([link removed]) .

The latest issue comes packed with loads of interesting articles from members and staff, news and updates, upcoming projects, reports from events, and more.

In his CEO Report, Brian provides an update from his recent visit to Vietnam, plans for twinning with Jordan and Brexit preparedness, while Chairperson John Stack updates us on what’s been going on during the summer and future plans.

Jim O’Leary provides an insightful personal perspective of ageing with a bleeding disorder in 2019 while Aislinn Farrelly writes about her experiences volunteering with the I.H.S.

The I.H.S. Youth Programme was back in action and Robert has a report about the summer meeting and there is an interview with Dylan Ryan in his run up to tackling the Dublin City Marathon in aid of the I.H.S.

We hope you enjoy this issue and remember, if you would like to contribute to future edition or suggest a story, or area that you would like to see covered, please email Barry at [email protected] (mailto:[email protected]) .
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Novel Treatments in Haemophilia & other Bleeding Disorders
A Periodic Review 2019 – Issue 2

The therapeutic landscape in haemophilia continues to change rapidly and it can be difficult to keep up to date.

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 second 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 publications section of haemophilia.ie ([link removed])

If you would like a hard copy, please get in touch with us on 01 657 9900.
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October Conference
Many thanks to everybody who came along to our Member's Conference in the Shearwater Hotel, Balinasloe!

With the debate, interactive session, update on the Lighthouse Project and Emicizumab, and yoga and lifestyle management on Sunday morning, we hope you had an informative and fun weekend!

Kids enjoyed arts and crafts, swimming, exercise sessions and a trip to a farm to see all manner of fascinating animals. For me, like most of the kids, the highlight was the magician on Saturday night!

Click here for photos from the weekend ([link removed]) .

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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

2019

November:

Haemophilia B Information Day

Date: Saturday, November 9th
Venue: Hotel Kilkenny, Kilkenny

2020

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: TBC

May

Women & Bleeding Disorders Info Day

Date: Saturday, May 9th
Venue: TBC

July

Father & Son(s) Overnight

Dates: Saturday May 18th & Sunday, May 19th
Venue: TBC

Mild Haemophilia Information Day

Date: Saturday, July 18th
Venue: TBC

August

Family Day Out

Date: Monday, August 10th
Venue: TBC

October

October Conference

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

– Further Events TBC –

Haemophilia B Information Day

Date: TBC
Venue: TBC

Mother & Daughter Overnight

Date: TBC
Venue: TBC

You can keep up to date with the latest I.H.S. info on Facebook ([link removed]) & Twitter ([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.

Buy a book, help the society!
A perfect gift for the readers in your life

‘A Nursing Life’ is the story of a Midleton-born nurse who rises to the top of her profession in the 1960s before marriage sees her having to leave her job and become a fulltime mother. Tragedy and comedy collide as tales of marital breakdown and a bullying matron mix with nights on the town and days on ever-changing wards as the health service.

The books have been kindly donated to us by author Aubrey Malone. They cost €10 (excl. P&P) – with all monies going to the society - and will be available to purchase at our forthcoming October Conference.

Happy Halloween!

We certainly hope you had fun over the long weekend & have even more tonight for Halloween!

We love a good costume here and would love to see your dress–up creations! Whether your costumes are spooktacular, magical, glamorous or funny, we would love to yours, or your 'little terrors'.

Send your photos to [email protected] (mailto:[email protected]) and we will share them on Facebook, and perhaps in the next
e-zine or magazine.

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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
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Dublin 8, Dublin
Ireland

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