Irish Haemophilia Society e-Zine: February 25 2022

Irish Haemophilia Society e-Zine: February 25, 2022
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AGM & Conference 2022

We are really excited for our ‘In Person Annual General Meeting & Conference’, taking place next weekend, March 4 – 6, 2022 in the Slieve Russell Hotel in Cavan.

Confirmation/registration packs have gone out in the post and if anyone has any queries relating to their booking, please contact Debbie in the office / [email protected] (mailto:[email protected]) .

We look forward to seeing you in Cavan!

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VHI Women’s Mini Marathon
Registration opens on March 2

Registration for the Women’s Mini Marathon will open on March 2 & we would welcome anyone taking part to fundraise in aid of the I.H.S.

Once you have registered, please contact Nina in the office for a T-shirt & details on fundraising.

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CHI Family Forum Virtual Meeting

The Family Forum at Children’s Health Ireland (CHI) was set up to provide a platform to share ideas, listen and work as partners in care, with our families, to make CHI a world renowned service for children, young people and their families.

There have been two Family Forum meetings to date and they are continuing to recruit new members to join our third Family Forum to be held virtually on the 2nd March 2022 10:30am - 1pm.

The Forum provides opportunities to meet other parents/guardian/caregivers/past patients who all have the same aim to help CHI deliver a service in line with the CHI mission vision and values where the voices of children, young people and their families are valued participants in decision making and innovation for the future in CHI.

The Family Forum want to establish an inclusive representation on the Family Forum that encompasses all voices across Irish society.

How do I become a member?
* You must be a parent/guardian/caregiver or past patient (18yrs or over)
* Over the last 3 years you must have attended one of the CHI hospitals (CHI at Tallaght, Temple Street, Crumlin or Connolly)
* You must be available to join the virtual meeting on 2 March 2022 at 10.30am-1pm
* Complete online application form here ([link removed]) or telephone +353 (0)1 409 6715

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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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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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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
Cathedral Court
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Dublin 8, Dublin
Ireland

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