Irish Haemophilia Society e-Zine: April 8, 2022

Irish Haemophilia Society e-Zine: April 8, 2022
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An Update from I.H.S. Chief Executive

World Haemophilia Week 2022
World Haemophilia Day 2022 falls on Easter Sunday - April 17^th. The main theme from the Society this year will be to mark the progress made in Haemophilia treatment and care in the 20 years since the publication of the Lindsay tribunal report in 2002. Treatment and care have improved greatly since that time and this has been facilitated by a partnership model of decision making between the haemophilia treatment centres and the Society. In turn, this partnership model has been greatly assisted by the formal involvement of the Society in the decision making bodies - the Statutory National Haemophilia Council and the non-statutory Haemophilia Product Selection and Monitoring Advisory Board. We will be highlighting this during the week surrounding World Haemophilia Day and indeed we refer to World Haemophilia week. We will be issuing a press release outlining the work of these important entities and also hearing some real life experience from an older adult with haemophilia and the parents of
two young children with haemophilia.

During the week, we shall also be launching a new website for the Society. We have been working over the course of the last several months to totally renew the website, to update the content and to make the new website more visually attractive. We will be launching the new website on April 19^th so please visit www.haemophilia.ie on or after that date. We would be very interested to hear your feedback. Work on updating the content will continue over the coming months but we hope you will find the new look website easier to navigate and more attractive. Do let us know your reaction

During the week, the Society will also collaborate with the National Coagulation Centre at St. James’s Hospital and Children’s Health Ireland at Crumlin as they launch a short video on the process of people with haemophilia or other inherited bleeding disorders moving from the paediatric to adult services.

Ukraine

Following the start of the appalling war in Ukraine, the Society had reached out to our counterparts in Ukraine to see what practical help we could provide for them. They were very busy moving people and families with bleeding disorders from eastern Ukraine to Lviv in western Ukraine and then on to Poland or further west. When people got as far as Lviv, they were typically exhausted and needed to rest for 1 or 2 days before arrangements were made to move them on. They asked for assistance with accommodation costs which we were glad to provide. The Society have booked and paid for a quadruple and double hotel rooms in Lviv for the next 2 months and the organisation there have now started using this for families with haemophilia who arrive in Lviv. The first three family groups have stayed there having travelled from cities under siege. They are pictured below leaving the hotel on their way further west to the Netherlands.

The Society have also been working with CHI at Crumlin and state agencies on the possible resettlement of a young girl with von Willebrand’s Disorder from Ukraine and progress is being made on this case also. We have not yet been notified of the arrival into Ireland of any people with haemophilia or other inherited bleeding disorder from Ukraine but we anticipate this will be a reality in the coming weeks.
Brian O’Mahony,
Chief Executive

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VHI Women’s Mini Marathon
Registration Open Now

Entries are now open for the VHI Women’s Mini Marathon 2022, which will be taking place in Dublin City on Bank Holiday Sunday 5th June.

In 1983, 9,000 incredible women entered Ireland’s first Women’s Mini Marathon in Dublin. In 2022, to celebrate its 40th magical year, WMM will stand for Women Making Magic!

Now one of the largest women’s event in the world of its kind. Over €225 million has been raised for charities, not to mention the hearts, souls and spirits raised every single step of the way. This special year, lets recognise and celebrate their magic.

We are very grateful to all the ladies who take part in the Mini Marathon for the I.H.S. every year, your support for the work of the Society is really appreciated. An event like this is so important, not only to raise funds but to raise awareness of haemophilia and other bleeding disorders.

So, if you have a bleeding disorder or if you are the mother, sister, daughter, niece, cousin or friend of an adult or child living with a bleeding disorder, now is your chance to show your support by taking part in this year’s VHI Women’s Mini Marathon to raise funds for the I.H.S.

For more info on VHI Women’s Mini Marathon or to register, please visit vhiwomensminimarathon.ie ([link removed]) .

If you would like to raise funds in aid of the I.H.S. or you would like more info about fundraising, please contact Nina in the office on 01 6579900 or email [email protected] (mailto:[email protected]) .

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A Shout Out to Members

Do you have any spare tourniquets or bandages? A friend of a member drives a bus regularly to the border between Poland & Ukraine.

If you have any of these hugely useful items, could you drop them off or post them to the office? If you have any questions, contact the office via [email protected] (mailto:[email protected])

Thanks in advance.

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Board Update

Jay McEvoy has stepped down from the I.H.S. Executive Board. We would like to thank Jay for all his work, time and dedication during his time on the board

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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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Irish Haemophilia Society
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