Your monthly digest from I.H.S. 

Irish Haemophilia Society eZine: September 2019
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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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October Conference 2019

Dates: Friday 18th to Sunday 20th October 2019
Venue: Shearwater Hotel, Ballinasloe

Bookings for the Members Conference 2018 have now closed!

Thanks to all who signed up, we are looking forward to an informative, fun and busy weekend. For those attending, you will receive a confirmation letter in the post two weeks before the event with all the details you'll need to know!

You can peruse the Preliminary Adults Programmes here ([link removed]) , and the Children's Programme here ([link removed]) .

We will see you in Ballinasloe!

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Marathon Fundraiser for I.H.S.

We are very grateful to everyone who organises or takes part in fundraisers for the Irish Haemophilia Society every year, your tremendous support for the work of the society is really appreciated.

Fundraising events are ever so important, not only in raising funds but to raise awareness of haemophilia and other bleeding disorders, and there is a big I.H.S. fundraiser on the horizon.

Dylan Ryan is running the Dublin Marathon in October and in doing so he will be raising money for the I.H.S. and awareness of haemophilia. The Dublin Marathon is an annual 26.2-mile (42.2 km) marathon in Dublin, held each year since 1980, this year’s race takes place on Sunday October 27th.

We will have an interview with Ryan in the Autumn Magazine but if you would like to track his training, donate (big or small) or just find out more, please click here ([link removed]) .

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Movember!

MOVEMBER is nearly here. Time to Man Up & Grow a Moustache, all for a good cause. Grow a moustache for the month of November and fundraise in aid of the I.H.S.

Just in case you are in any doubt of what is expected of you, let's clarify. Starting from the 1st of November, you will start off clean shaven and then for the rest of the month, you can groom, trim and wax your way to a fine moustache, finishing on the 30th of November. You can set up a fundraising page on everydayhero.ie, it is very easy to do and only take a few minutes.

A fundraising page allows you to share a link through your Facebook page or just email to everyone or we can send you a sponsorship card.

We would really appreciate your support, to take part please contact Nina on 01-657 9900 or email [email protected] (mailto:[email protected]) .

Thank you!

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The Life of O'Reilly

The entire Irish Haemophilia community were greatly saddened by the loss of I.H.S. stalwart Ger O'Reilly earlier this year - a cheerful, resilient and all round nice guy.

Friends of Ger in the Acorn Club are organising a concert to celebrate his life on October 11 in his hometown of Freshford, Co. Kilkenny.

If you would like to attend, all the details you need are on the flyer up above.

It looks like a great night and a fantastic way to celebrate Ger's life.
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A couple of updates from the NCC for members….
Firstly, the iNDICI National electronic healthcare record (EHR) for people with Haemophilia and Allied Bleeding disorders will go live on October 14, 2019. While the system has been well tested and major glitches are not anticipated, they would like to make patients aware that there may be some delays in the centres on that week.
And….

Secondly, the staff in the NCC would like to advise patients that if you are on Home treatment and are due to have a procedure or surgery in St James’s Hospital, the Haemophilia nurse will be in contact with you a week prior to your procedure/surgery so that a treatment plan is put in place regarding the days you will need to take your prophylaxis. This patient safety initiative is being undertaken to try to reduce delays on the day of surgery/procedure, for the patient.
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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.

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

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.

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What Happens Next?

The deadline for applications for the I.H.S. Educational Grants has now passed; best of luck to everyone who applied!

The next steps?

A subgroup of three people from the executive board (which cannot include anyone with a family member applying for any of the grants) will meet to consider and score the applications and make recommendations to the rest of the executive board regarding recipients.

Applications are scored on the following:

• The quality of the application
• The information given on the application form
• Involvement in the Irish Haemophilia Society
• Financial need
• How many in the family are going to college
• If the application is a first-time application

The successful applicants will be notified at the end of October by letter.

Dates for Your Diary

2019

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

2020

March:

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

October:

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

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.

#BloodHealth
As with 2018, the I.H.S. took part in the #BloodHealth campaign this year.

Our own Brian O'Mahony contributed to two pieces highlighting innovation and education in the haemophilia community, and why we are living in exciting times. The articles appeared in supplements with The Guardian & Irish Independent - you can read them here ([link removed]) and here ([link removed]) .

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