Irish Haemophilia Society eZine: July 2, 2021
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Educational Grants 2021
Applications Now Open

We are delighted to announce that applications are now invited for the 2021 Educational Grants.

The Society offers educational grants each year to people with haemophilia or related bleeding disorders, and/or their immediate family members who go on to do a post second level educational course.

The purpose of the grant is to offer financial support to students to assist them with the extra expenses involved with their studies.

** Please note, even if you are eligible to apply for more than one grant, you can only apply for one of them.

You can apply online or you can download the application forms below, and post the completed forms into the office; there is more info on the various grants is available here ([link removed]) .

Maureen & Jack Downey Educational Grant: Apply Online ([link removed]) / Download Application Form ([link removed])

Margaret King Educational Grant: Apply Online ([link removed]) / Download Application Form ([link removed])

Father Paddy McGrath Educational Grant: Apply Online ([link removed]) / Download Application Form ([link removed])


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We’re excited to be involved with Media Planet on the Heart and Blood Campaign, launching in the Irish Independent & online today.

Follow the links to read the articles written by our Chief Executive Brian O'Mahony:

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Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review
2021 – Issue 1

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.

Read / download it here ([link removed])


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Patient Portal Update

A key component to the National Haemophilia project is the development of a Patient Portal (PP). The Patient Portal will be a secure online website to give you convenient 24-hour access to your own personal health information (medical record) from anywhere with an Internet connection.

Using a secure username and password, you will be able to view health information from your National Haemophilia Electronic Health Record (EHR) such as:
• Diagnosis
• Medical correspondence
• Prescriptions
• Immunisations

In addition, you will have the facility to view your appointments (if your Treatment Centre uses the EHR to make those appointments). We would hope that eventually you would be able to upload your own health data, either from wearable devices or by scanning in your own documents, such as vaccines you received from your GP.

Of course, ensuring that your data is secure, and you are fully informed of how that is achieved, is of paramount importance, so we have been working with the Patient Portal provider and the Data Protection Officers of the HSE and the Treatment Centres to develop protocols and documents such as User Agreements and Privacy Policies to explain everything.

This work, along with the Cyber Attack, has delayed the planned pilot phase of this initiative, but we’ll keep you updated on progress.



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Update on services at Children’s Hospital Ireland, Crumlin

Services at CHI ,Crumlin have been severely affected by the cyber attack on the HSE. Clinics have been scaled back and review clinics for children with severe bleeding disorders are now held on a limited basis on Monday’s. Diagnostic clinics have been postponed and new referrals are being triaged. We will update members with any further information received.

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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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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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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
** Irish Haemophilia Society ([link removed])

** World Federation of Hemophilia ([link removed])

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Irish Haemophilia Society
Cathedral Court
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Dublin 8, Dublin
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