Irish Haemophilia Society E-zine: June 5, 2020

Irish Haemophilia Society eZine: June 5, 2020
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Update from I.H.S. CEO
June 5, 2020
iPATH Research Programme

Today, Friday June 5^th, we had a very interesting presentation by Prof. James O’Donnell from the NCC on the Irish Personalised approach to the Treatment of Haemophilia (iPATH) Research project. The project is divided into 4 distinct work packages which will examine some of the fundamental aspects of the biology of haemophilia. This will include looking at why some people with severe haemophilia bleed much more or less frequently than others and why some people develop inhibitors and others do not. The project will involve carrying out a full genome analysis on each participant. This, when viewed in collaboration with their bleeding history and replacement therapy use, should provide information which will be very useful in answering some of these fundamental questions and in individualising haemophilia care.

One size does not fit all in terms of treatment. It is notable from the research that 1 in 10 people with severe haemophilia do not develop joint bleeds but 1 in 12 of those with moderate haemophilia require prophylaxis due to their bleeding tendency. The physiotherapy work under work package 1 used sophisticated and detailed tools to look at fitness, body composition and physical activity. The findings showed a significant level of physical inactivity, increased weight and lack of cardiovascular fitness among the group of 54 people with haemophilia who enrolled. Chronic joint arthropathy, pain and functional disability definitely contributed to these findings, but it is clear from the research that people with severe haemophilia need to consider greater levels of physical activity, more cardiovascular fitness and better weight management. An individualised approach will be required. As a result of these findings and in line with improved treatment options over recent years and into the
future, the Society have made proactive lifestyle improvements a key feature of our new strategic plan for members.

The focus in the future will not just be on preventing bleeding episodes but improving health, fitness and quality of life and promoting sustainable physical activity. A pilot programme Gym/Exercise class for some older adults with severe Haemophilia over an 8-week period has just been completed with the physiotherapy team from the NCC. We hope to see this type of programme rolled out to benefit many members over the coming months and years.

Zoom Meetings

We have some very exciting and interesting Zoom topics on the way for members including an update on the New National Children’s Hospital from Development Board CEO Eilish Hardiman, a talk on heavy menstrual bleeding from gynaecologist Dr. Geraldine Connolly and a view on where Haemophilia care and treatment will be by the year 2030 from Prof. Mike Makris from the UK.

WFH Virtual Summit

The WFH International Congress which is normally held every second year was due to take place in Malaysia from June 14^th to 19^th. This has always been a very interesting conference where attendees can be updated on all the scientific, clinical and treatment developments in addition to enjoying sessions aimed at people with haemophilia or parents. Of course, the cost of attending between registration fees, flights and accommodation put it outside the reach of most people. The Conference for this year has been cancelled and, in its place, WFH have organised a virtual conference or summit. The good news is that registration is free of charge. This is perhaps a once in a lifetime opportunity for many people with haemophilia or parents to attend a WFH Conference/ summit for the entire summit or for sessions or lectures of particular interest. We would encourage members to consider registering and attending to hear from some of the best speakers globally on haemophilia and bleeding disorders.

The programme for the summit can be viewed here ([link removed])

The registration form can be accessed here ([link removed])

Brian O’Mahony
Chief Executive
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Upcoming Webinars

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Wednesday, June 10th @ 11am - Update on New Children’s Hospital with Eilish Hardiman, CEO

Friday, June 19 @ 11am - Haemophilia Care in the year 2030 with Prof. Mike Makris, Director of the Sheffield Haemophilia and Thrombosis Centre,

Friday, June 26 @ 11am - Heavy Menstrual Bleeding in Adolescents. Dr. Geraldine Connolly

Wednesday, July 1 @ 2pm: Update from the NCC with Dr Niamh O' Connell, National Director & Consultant Haematologist, NCC

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

Join Zoom Meeting
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Meeting ID: 905 221 0070

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 some 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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Summer Magazine Gallery

We've all been been finding ways to keep occupied at home recently, a task which was made much more palatable by the fab weather last week!

We'd love to include a photo gallery of what members have been up to for our Summer Mag.

It could be anything from DIY or gardening, BBQs or just chilling, home schooling or online quizzes - whatever you've been up to, we'd love to include some of your photos in our next magazine so, please, send them on to barry@haemophilia

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WFH Virtual Summit

Following cancellation of the WFH International Congress due to Covid-19, WFH have organised a virtual conference.

It takes place June 14 to June 19 & registration is FREE

The programme for the summit can be viewed here ([link removed])

The registration form can be accessed here ([link removed])
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Events Update

Hardly a surprise given the current situation we find ourselves in but so far we've had to make some changes to our events:

June

Mother & Daughter(s) Overnight

Date: Saturday June 20th & Sunday, June 21st
Venue: Lilliput Adventure Centre

This event has unfortunately been cancelled.

July

Father & Son(s) Overnight

Dates: Saturday July 4th & Sunday, July 5th
Venue: Lilliput Adventure Centre

FYI: This event has unfortunately been cancelled.

Mild Haemophilia & Haemophilia B Information Day

Date: Saturday 18th July

This event will now take place online, via Zoom.

August

Family Day Out

Date: Monday, August 10th
Venue: Dublin Zoo

FYI: This event has unfortunately been cancelled.

Von Willebrand’s Information Day

Date: Saturday, August 29th
Venue: Castleknock Hotel, Dublin

It is currently planned to proceed with this event
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Annual Report 2019

Our Annual Report 2019 is available now with overviews on our activities, events, support and finance, and more from last year.

A hard copy will be be printed and mailed to member's in the future but for now, it's digital only.

To read or download, pleaseclick here ([link removed]) .
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Strategic Plan 2020 - 2024

Following much work and consultation, the board and staff of the I.H.S. completed a new Strategic Plan to run from 2020 to 2024.

This new plan will guide our direction and activities for the next number of years as we continue to provide the optimum information, services and support to people living with haemophilia, von Willebrand’s and other inherited bleeding disorders, and their families.

You can read / download the Strategic Plan here ([link removed]) .

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