Irish Haemophilia Society E-zine: May 15, 2020

Irish Haemophilia Society eZine: May 15, 2020
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Update from I.H.S. CEO
May 15, 2020
Society has New Tagline

You may have noticed recently, if you logged onto the website, that the Society has a new tagline under the organization name. While we remain named “The Irish Haemophilia Society”, we have added underneath a tagline stating, “Representing people living with haemophilia, von Willebrand’s and other Inherited bleeding disorders”. This will now be reproduced on our headed paper and social media accounts. The Society has always offered services and support to all those with inherited bleeding disorders, but we accept that this may not be obvious from the name of the organization. We would like to have more members with von Willebrand’s and with rare bleeding disorders so that we could offer them more services and support. In our new strategic plan for 2020 to 2024, we will be carrying out a range of actions and initiatives to provide this enhanced level of services and support.

Our World Haemophilia Day event this past month was due to be on the topic of von Willebrand’s. This has now been postponed until August, but it will take place. The information day will be accompanied by a new information booklet and a short animated video which we can also use to raise public awareness of VWD and encourage more people with VWD to contact the Society. We will also be working with the comprehensive care centres to further these objectives. The new tagline is an important element of this strategy. If people with VWD or a rare bleeding disorder are seeking information, the tagline lets them know that we are there to offer support and information. We will be advertising this via the centres and hopefully it will make it easier for a person with VWD or a rare bleeding disorder to find us if they are searching online for information.

Our series of Zoom meetings for members continues. This week, we had a meeting on resilience with the psychologist from the NCC. Next week, we will have a similar meeting with the psychologist from the pediatric centre. Future planned meetings include updates on Hemlibra for parents, the Lighthouse project, physiotherapy and exercise for children, the iPATH (Irish Personalised Approach to the Treatment of Haemophilia) Research project and an update on the new National Children’s hospital.

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;
Friday, May 15th @ 6pm: Mother’s group.

Tuesday, May 19th @ 11am: Resilience for Children with Yvonne Duane, Psychologist at CHI Crumlin

Thursday, May 21st @ 11am: Update on the Lighthouse Project with Fergal Mc Groarty, St. James's Hospital

Wednesday, May 27th @ 11am: Hemlibra Update for Parents with Dr Beatrice Nolan and CHI Crumlin Team

Friday, June 5th @ 11am – an Update on the iPATH Research project with Professor James O'Donnell

Wednesday, June 10th @ 11am - Update on New Children’s Hospital with Eilish Hardiman, CEO

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.

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EHC Webinars on Women and Bleeding Disorders

In light of current events, the European Haemophilia Consortium (EHC) had to cancel their 2020 Conference on Women and Bleeding Disorders, however, in its place, the EHC are organising two very interesting webinars on Women and Bleeding Disorders.
* The Management of Heavy Menstrual Bleeding; Thursday 28 May (12.00 noon to 13.30)
* The Place of Women in Haemophilia Comprehensive Care; Friday 29 May (9am to 10.30)

Registration for the webinars is free and you can do so via this link ([link removed]) .

There are more details about the sessions and speakers below and we hope that you will be able to join us in attending.

EHC Online Webinar on the Management of Heavy Menstrual Bleeding – Thursday 28 May (12.00 noon to 13.30)

This webinar will look at:
* The basics: ‘How do periods change from adolescence to menopause?’
* What does a normal menstrual cycle look like and how it is impacted by issues in coagulation?
* Case-studies on how to manage your periods in different situations including:
* Getting a teenager ready for her first period.
* Managing heavy menstrual bleeding – what are the options?
* Planning to get pregnant – how do you stop contraception and manage your periods.
* Reaching menopause – what to expect and how to manage it?

EHC Online Webinar on the Place of Women in Haemophilia Comprehensive Care – Friday 29 May (09.00 to 10.30 hrs)

This webinar will look at:
* What is comprehensive care and why it is important in rare bleeding disorders?
* What are some of the issues faced by women to access comprehensive care services? – Discussion between a clinician and patient.
* Case studies on initiatives that have worked and have helped to better include women in CCC?
* Strong WBD committee and cooperation with clinicians,
* EAHAD survey – Highlight some of the structural barriers,
* Joint clinics – how does it work?

Confirmed Speakers:

Rezan Abdul-Kadir, Consultant Gynaecologist, Royal Free Hospital, London, United Kingdom

Yannick Collé, Member, EHC Women and Bleeding Disorders Committee, France

Michelle Lavin, Clinical Lead for coagulation haematology research in Irish Centre for Vascular Biology at the Royal College of Surgeons in Ireland

Declan Noone, President, EHC, Ireland

Karin Van Galen, Consultant Haematologist, Van Kreveldkliniek, University Medical Centre Utrecht, The Netherlands

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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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Board Update

We are delighted to welcome two members to the I.H.S. Executive Board; Jay McEvoy and Dan McIntyre and we are all looking forward to working with Jay and Dan over the coming months and years.

As we welcome Jay and Dan to the fold, we also say goodbye to Matthew McCabe from the I.H.S. Executive Board. We would like to thank Matthew for all his work, time and dedication in his time on the board.

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Explaining Coronavirus to Children

It is pretty tough for us all to understand and keep up-to-date with all that's going on with Covid-19 - even tougher still is explaining coronavirus to children.

Thankfully there are some freely available publications to help out, like this one Coronavirus: A Book for Children; a book published by Nosy Crow, a British children’s publisher, with illustrations by Axel Scheffler, the artist who created images for the best-selling children’s book “The Gruffalo".

Download the PDF 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 Our Lady’s Children’s Hospital, 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 Our Lady’s Children’s Hospital, 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 Julia 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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Events Update

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

May

Women & Bleeding Disorders Info Day

Date: Saturday, May 9th
Venue: Hodson Bay Hotel, Athlone, Co. Westmeath

FYI: This event has been postponed and will be held in 2021 instead.

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

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