Irish Haemophilia Society e-Zine: Nov 05 2021

Irish Haemophilia Society e-Zine: November 05, 2021
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Physiotherapy / Exercise Classes for Women

As mentioned in the last e-Zine, we will be starting an additional on-line physiotherapy/exercise class for women with bleeding disorders, carriers or partners of people with bleeding disorders.

The first session will take place on Wednesday November 17 @ 7pm, and continue on each subsequent Wednesday.

Classes will be for an hour and the Society will provide the TheraBand’s required.

Places are limited and we have already seen a lot if interest, so, if you would like to take part please send your details to [email protected] (mailto:[email protected]) today.
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Upcoming Webinars

Continuing with our series of Webinars, we have further meetings coming up on;

Wednesday, November 10 @ 6PM:

'Hemlibra for Children'

with Dr Beatrice Nolan, CHI at Crumlin

To join us for any of these meetings, please use the link & meeting ID below:

Join Zoom Meeting
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Password: 1968

If you plan to join, we would appreciate it if you could drop Barry an email at [email protected] (mailto:[email protected]) to give us an idea of numbers.

FYI: We shall be recording the audio and slides from selected Webinars to make them available to those that cannot attend. Please be assured that only audio from speaker’s presentations and not Q&As will be recorded. Attendees will not be identifiable on the recordings.

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AGM & Conference 2022
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.

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Re-opening Face to Face Clinics in the NCC

We have received an update from the National Coagulation Centre regards the resumption of face to face clinics, please see below:

Resuming Face to Face clinics in the NCC

As you are aware during the Covid-19 pandemic we had reduced the number of patients we could see on a face to face basis and commenced reviewing patients via Telehealth. In line with the governments re-opening plans we are going to start resuming our Face to Face clinics. We will continue to provide a level of Telehealth for patients we feel will benefit the most.

If you have an upcoming appointment in the National Coagulation Clinic please take it that this appointment will be on a Face to Face basis and you will have to attend the centre, unless we contact you to state otherwise.

If you have any concerns or questions please do not hesitate to contact the National Coagulation Centre on 01-4162142 or email: [email protected] (mailto:[email protected])
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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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I.H.S. Autumn Magazine Out Now!

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

We, like you are looking forward to the return of life to some semblance of normality as we head towards the close of 2021.

In this issue, Brian provides an update on the H & H Ward in St. James’s Hospital, an additional Haemophilia Consultant Post for CHI, Crumlin & our October Conference.

Elsewhere, Brian pays tribute to Michael Davenport, former I.H.S. Chair and board member, who passed away in June this year. Michael will be fondly remembered by his family and friends and his many friends in the haemophilia community.

We are eternally grateful to all our volunteers. We could not cater to the needs of our membership without the hard work, generosity, dedication and enthusiasm of our very valuable and vibrant volunteers – and who better to regale tales of volunteering with the I.H.S. than volunteers themselves? Eve and Sam do just that, sharing their volunteering stories.

John Stack provides us with his Chairperson’s update and I.H.S. member Colm Walsh writes about his experience in the 10k Galley Head Swim off Ireland’s South Coast in July.

You can read / download the latest issue here ([link removed]) – we hope you enjoy reading it!
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Dublin Zoo Visit Photos

We were delighted with the uptake of free family passes for Dublin Zoo and we hope all of you who did, have a great time and enjoy your visit.

We would love it if you sent us some photos of your trip so we can include in our e-Zine / magazine, please send them to us at [email protected] (mailto:[email protected])

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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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