Irish Haemophilia Society E-zine: June 4, 2021

Irish Haemophilia Society eZine: June 4, 2021
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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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Physiotherapy / Exercise Classes

The Society are initiating a new programme of Physiotherapy/Exercise classes for members as part of our new focus on lifestyle and healthy living.

Groups 1 & 2 have already started and we are now actively recruiting participants for groups 3 & 4. Each programme will consist of 6 evening classes each of 1 hour duration. Each group will be run by a haemophilia physiotherapist from St. James's Hospital: Sheila Roche and Mark McGowan. A seventh education evening will be devoted to updates on lifestyle with a dietitian and counsellor or psychologist.

Each group will be for a maximum of 8 people. Recruitment will be on a first come first served basis.

The Groups and relevant dates will be as follows:

Group 3: People with Severe Haemophilia, age >50 years
Schedule: Thursday, June 17 (Education evening)
Tuesday June 22, June 29, July 6, July 13, July 20, July 27
Time: 7-8pm

Group 4: Women with Bleeding Disorders (including carriers) , age 18 years or older
Schedule: Thursday June 17 (Education evening)
Thursday June 24, July 1, July 8, July 15, July 22, July 29
Time: 7-8pm

If you would like to participate, please e-mail info (mailto:[email protected]) @haemophilia.ie (mailto:[email protected]) . Specify which group you are eligible for and confirm the address to where we will mail the TheraBand.

We will be organising additional groups for other categories and age groups among the membership from September onwards.

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2021 VHI VIRTUAL WOMEN'S MINI MARATHON
REGISTRATION IS NOW OPEN

This year's Women's Mini Marathon will be a virtual event and will take place on Sunday 19th September. You can race the real route of the VHI Women's Mini Marathon in Dublin City from your doorstep, anywhere in the WORLD using a brand new event App

Sign up today and run, walk or jog the Virtual Vhi Women's Mini Marathon, and receive an exclusive finishers t-shirt and a 2021 commemorative medal.

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 Virtual Women’s Mini Marathon to raise funds for the I.H.S.

Visit vhiwomensminimarathon.ie ([link removed]) to register online.

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

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

Tuesday, June 8 @ 6PM:

An Open Forum Discussion Cork Coagulation Centre

with Dr Cliona Duggan, CUH

To join us for any of this meeting, 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] 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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Emicizumab (Hemlibra®) Booklets

The Irish Haemophilia Society is delighted to share two new booklets on Emicizumab (Hemlibra®).

There is one booklet for people with Factor VIII Inhibitors and one for people with Factor VIII deficiency without Inhibitors.

These publications have been produced as an educational tool for members and we hope you find them useful and informative.

The I.H.S. does not engage in medical practice and does not recommend particular treatment for specific individuals. It is strongly recommended that individuals seek the advice of their haemophilia treating clinician and / or consult printed instructions provided by the pharmaceutical company before administering the therapy referred to in this publication. The I.H.S. does not endorse particular treatment products or manufacturers.

You can read / download them here ([link removed]) . If you would like a physical copy, please contact us at 01 657 9900 or [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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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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LINKS OF INTEREST
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