Irish Haemophilia Society e-Zine: January 28, 2022

Irish Haemophilia Society e-Zine: January 28, 2022
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CEO Update

AGM and Conference

We are really looking forward to welcoming members back to the AGM and Annual Conference in the Slieve Russell Hotel in Cavan on March 4^th to 6^th.

Registrations to date have been brisk and the in-person event will definitely go ahead as planned. I have no doubt that the members and children are very much looking forward to seeing each other in person, perhaps for the first time in two years. It seems surreal that the pandemic lockdown started exactly one week after our AGM and Conference in 2020; almost two years to the date prior to this year’s meeting. No one at that time thought this situation would last so long.

We have a very exciting programme planned covering topics including current and novel therapies, gene therapy, experience in Ireland with Emicizumab, the physiotherapy and exercise programme and an open forum with the health care team members present. In addition to expert speakers from St. James Hospital and CHI at Crumlin, we will be welcoming as speakers Prof. Flora Peyvandi from Italy and Prof. Mike Makris from the UK; both globally renowned speakers.

The provisional programmes for adults and young members are on our website ([link removed]) and further details are provide below.

Brian O'Mahony

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AGM & Conference 2022
The closing date for bookings is next Friday, February 4 2022.

We are delighted to announce that our ‘In Person Annual General Meeting & Conference’ will take place over the weekend of the March 4 – 6, 2022 in the Slieve Russell Hotel in Cavan.

We have been taking a lot of bookings for this year's conference and please note that the 'Kidlink' group is now at capacity.

The closing date for bookings is Friday, February 4 2022.

If you would like to attend this conference, please completeonline registration form here ([link removed]) .

The provisional programmes for adults and young members are on our website ([link removed]) .

For more information, please see haemophilia.ie ([link removed])

We look forward to seeing you all in March.


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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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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.

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.

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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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