Irish Haemophilia Society e-Zine: December 17 2021 🎄🎅

Irish Haemophilia Society e-Zine: December 17, 2021
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Merry Christmas from the I.H.S.

The Irish Haemophilia Society office will close for Christmas at 2pm on Thursday, December 23 2021 & will reopen on Tuesday, January 4 2022 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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Our Winter Magazine Out Now!

Our Winter Magazine is out now and comes packed with lots of interesting articles from members and staff, news and updates, reports and more.

2021 has been another trying year but when compared to 2020, there is much more cause for optimism and we hope you, like the I.H.S. team, are looking forward to Christmas.

Looking to next year, you can check out the provisional programme for our AGM & Conference 2022, which will take place in the Slieve Russell Hotel, Cavan in March.

In his CEO Report, Brian looks back at our October Conference and provides updates on Gene Therapy and revamping of our website, while elsewhere he recalls when Dublin hosted the WFH World Congress in 1996.

There is news of educational grants awards for 2021, a report from the October Conference, our first in person event since the AGM in March 2020 on and Feargal Mc Groarty provides an update on the National Haemophilia Lighthouse Project and Patient Portal.

There are plenty more useful updates and news, and on the back cover, you’ll find hospital opening hours for the Christmas period.

We would like to thank everyone who contributed to our publications this year – be that writing articles, sending in ideas, photos or feedback – and of course, thank you all for reading the magazines, without you, there would be

Members should have all received your copy of the magazine in the post but you can read ithere ([link removed]) . We hope you enjoy reading it.

Wishing you all a very Happy Christmas and a healthy and prosperous New Year.
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Novel Treatments in Haemophilia & other Bleeding Disorders 2021 – 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’. It is designed to be informative for both people with bleeding disorders and health care workers.

It is available to read / download here ([link removed]) & for physical copies, please contact the office.

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Hospital Opening Hours for the Christmas Period

As is the season, there will be some changes to hospital opening hours over Christmas. Please see below for details.

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

Thursday 23 December 2021 - as normal (8.30am - 5pm)
Friday 24 December 2021 - closed
Saturday 25 December 2021 - closed
Sunday 26 December 2021 - closed
Monday 27 December 2021 - closed
Tuesday 28 December 2021 - closed
Wednesday 29 December 2021 - closed
Thursday 30 December 2021 - closed
Friday 31 December 2021 - closed
Saturday 01 January 2022 - closed
Sunday 02 January 2022 - closed
Monday 03 January 2022 - bank holiday service

Normal services from Tuesday, January 4, 2022

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

Thursday 23 December 2021 - as normal (8am- 4pm)
Friday 24 December 2021 - closed
Saturday 25 December 2021 - closed
Sunday 26 December 2021 - closed
Monday 27 December 2021 - closed
Tuesday 28 December 2021 - closed
Wednesday 29 December 2021 - closed
Thursday 30 December 2021 - closed
Friday 31 December 2021 - closed
Saturday 01 January 2022 - closed
Sunday 02 January 2022 - closed
Monday 03 January 2022 - closed

Normal services from Tuesday, January 4, 2022

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

Thursday 23 December 2021 - as normal (8am- 5pm)
Friday 24 December 2021 - closed
Saturday 25 December 2021 - closed
Sunday 26 December 2021 - closed
Monday 27 December 2021 - closed
Tuesday 28 December 2021 - limited elective activity
Wednesday 29 December 2021 - limited elective activity Thursday 30 December 2021 - limited elective activity
Friday 31 Decembers 2021 - limited elective activity
Saturday 01 January 2022 - closed
Sunday 02 January 2022 - closed
Monday 03 January 2022 - bank holiday service

Normal services from Tuesday, January 4, 2022

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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Brian O’Mahony Award

Nominations are now open for the Brian O’Mahony Award for outstanding contribution to haemophilia care in Ireland.

Nominations can only be proposed by members of the society and members of the current board or staff cannot be nominated.

If you would like to nominate someone who, in your opinion, has made a real difference in haemophilia care in Ireland, please send your nomination to [email protected] (mailto:[email protected])

The deadline for nominations is January 21, 2022.
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AGM & Conference 2022
March 4 - 6 | Slieve Russell Hotel, Cavan

Preliminary Programme
After the success of our October Conference, we very much look forward to seeing the entire community back at our AGM and Conference in the Slieve Russell Hotel, Cavan over the weekend of March 4th - 6th, 2022.

For now, we are delighted to share provisional programme with you all.

Friday March 4th

20.00 Buffet Dinner

Saturday March 5th

10.00 - 12.30 Annual General Meeting
12.30 - 13.30 Lunch
13.30 - 14.30 Update on Current and Novel Therapies - The Next 5 years
14.30 - 15.30 Gene Therapy - Yes or No
15.30 - 16.00 Coffee Break
16.00 - 17.00 The I.H.S. Physiotherapy/Exercise Programme – A Year of Experience
20.00 Gala Dinner

Sunday March 6th

10.00 - 11.00 Experience with Emicizumab in Children and Adults in Ireland
Parallel Session
10.00 - 11.00 von Willebrands Disorder - Treatment in the Next 5 Years
11.00 - 11.30 Coffee Break
11.30 - 12.30 Open Forum
13.00 Buffet Lunch and Depart

More details will be posted to members in the New Year

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EHC Educational App EHCucate goes live

The new educational app from the EHC, EHCucate, has gone live and you can download it to your device from the iOS App Store and Android Google Play.

With the sheer volume of information on rare bleeding disorders and novel therapies, looking for answers can feel overwhelming, complex and confusing!

This is why the EHC has processed years of research and publications from reliable and specialized sources to create EHCucate – an educational and dynamic app tailored to you!

The App provides info in an accessible and engaging way with easy navigation and comes with an extensive glossary of terms.

You can bookmark elements you want to add to your library, improve your knowledge and test your understanding with many quizzes, explore a variety of in-app media, track your progress, check our suggestions for further exploration on your topics of interest.

EHCucate is the ultimate resource repository and educational tool for patients, patient advocates and anybody interested in novel therapies for rare bleeding disorders.

You can now download it on your device from the iOS App Store and Android Google Play.

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Travelling or Studying Abroad? ✈️

What You Need to Know....

If you are relocating or studying abroad there is a lot to consider before you travel.

Each country has their own rules and regulations that you must follow to ensure you receive equivalent healthcare to what you receive here in Ireland.

Most countries cover emergency / urgent healthcare that is required while a person is visiting, in accordance with your health / travel insurance. However, this usually does not extend to regular haemophilia treatment and does not cover prophylaxis nor regular on demand therapy.

To help, our outreach co-ordinator Robert has designed a handy and informative infographic to outline all you need to know. You can check it out on our website ([link removed]) .

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My Buddy Cormac
Education tool for children with haemophilia & their families

A clever education tool for children with haemophilia and their families has been created through an innovative collaboration involving students from the Creative Media Department of the Munster Technological University, Children’s Health Ireland at Crumlin and the Irish Haemophilia Society.

My Buddy Cormac, an informative and positive awareness animation about haemophilia, focuses on the experience and challenges faced by children with the condition when treatment in hospital is required.

The story is told from the perspective of a child and it delivers an enlightening and creative take on events.

The animation and visual guide, which is aimed at children aged between eight and 12.

You can watch the animated video / read the accompanying guide on our website ([link removed])

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Watch I.H.S. Webinars On Demand

We've been uploading recordings from our ongoing series of webinars so you catch up on the ones you've missed at your convenience

A sample of what we have uploaded so far;
* Covid-19: An Update on Vaccines & Side Effects with Prof James O’ Donnell
* Staying Healthy at Home: Physiotherapy and Exercise Groups with Sheila Roche, St. James’s Hospital
* An Update on the National Coagulation Centre with Dr Niamh O’Connell (Oct)
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
* Exercise and Physical Activity for Children with Paula Loughnane, Senior Physiotherapist at CHI Crumlin
* Dental Care and Nose Bleeds in Children with Dr Kirsten Fitzgerald and Dr. John Russell
* Gene Therapy Discussion with I.H.S. CEO Brian O'Mahony & EHC President, Declan Noone
* The Role of the Advanced Nurse Practitioner in Haemophilia with Niamh Larkin, cANP

You can watch them here ([link removed]) .

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Hyde Square Apartments

Just to remind you all, that the Hyde Square apartments will continue to be available for members and bookings will be taken as normal.
* People with haemophilia or related bleeding disorders from outside of Dublin, when attending St. James’s Hospital or Children’s Health Ireland at 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 Children’s Health Ireland at 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 us 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.

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