Irish Haemophilia Society E-zine: July 31, 2020

Irish Haemophilia Society eZine: July 31, 2020
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CEO Report | July 31, 2020


In the past week, I recorded a Podcast with Dr Nguyen Thi Mai for broadcast next month on the collaboration and successful twinning programme between the Irish Haemophilia Society and the Vietnam Haemophilia Association. It is worth recalling some of the highlights . We worked with Vietnam from 2010 to 2019 under the auspices of the World Federation of Hemophilia (WFH) Twinning Programme and later as part of the WFH Global Alliance for Progress (GAP) programme.
It was a great pleasure working with Dr Mai, Prof. Tri, Dr. Khanh and all their colleagues in Vietnam. It was also a great pleasure to meet with, encourage and mentor several young leaders with haemophilia and parents of children with haemophilia and see them become more active in the organisation of care in their country. It was a challenge working in such a very different culture in a country with a population of 97 million people. The haemophilia centre team from Melbourne led by Vietnam born Prof. Huyen Tran also worked diligently with us and with Vietnam. It is worth restating some of the achievements in improved care and organisation during our time working together.
* Use of factor replacement therapy increased in excess of 300% and crucially the requirement for many people to pay for part of the cost of their treatment was removed
* Pilot programmes for home treatment and low dose prophylaxis were started
* Humanitarian aid of factor worth approximately €5 million each year were donated to Vietnam by WFH as part of the programme
* An organised and agreed network of 4 comprehensive care centres supported by 7 secondary centres was established
* The Governance structure of the Vietnam Haemophilia Association was streamlined and improved
* New chapters and haemophilia clubs were established in several cities
* More volunteers were recruited and trained
* Several publications were produced in Vietnamese, some based on Irish Haemophilia Society publications
* Several young leaders were identified and trained
* The Society funded a home adaptation programme which supplied items such as handrails, crutches and wheelchairs to people with haemophilia
* The Society also funded a 4 year micro employment programme which gave independence or assistance to some people with haemophilia and helped them to set up their own small business venture

The programme was, I believe, also of great benefit to our staff who learned to work strategically in another country and to our members as it gave them a real opportunity to place their own lived experience with haemophilia in the broader context of looking at the challenges facing adults, children and families with haemophilia in Vietnam.

We also had the active support of the Irish Embassy in Hanoi and indeed it was a great pleasure to have President Michael D Higgins meet with the leaders of the Vietnam Haemophilia Association during his state visit to Vietnam in 2016.

Parents handbook and upcoming publications

We will shortly be launching a new comprehensive handbook for parents of children with haemophilia or von Willebrands disorder. This is packed full of useful information and covers all ages from babies to teenage years. The Handbook will be launched virtually on our website. It will also be mailed to all parents of children on our mailing lists and we will be making it available at the Comprehensive care centres and treatment centres in Dublin, Cork and Galway

A new edition of our Novel Treatments report, based on the EHC publication, is now available on the website. We will also be doing a targeted mailing of this document in the coming weeks and it will also be available from the centres.

It is also out intention to have available an updated version of our information booklet on von Willebrands disorder, prior to our von Willebrands information day on August 29th

Later in the year, we plan to produce information booklets on Emicizumab and on Gene Therapy.

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Upcoming Webinars

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Thursday, August 27: 'Future services in the NCC and the role of the advanced nurse practitioner' with Niamh Larkin.

Wednesday, September 2: ‘The Future Role of the Society; Have Your Say.’ This will give members the opportunity to have discussions.

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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Youth Leadership Programme

The I.H.S. Youth Leadership Programme aims to facilitate young people affected by bleeding disorders to communicate with each other, share experiences and learn life skills.

The programme is open to young members aged between 12 and 17 and will be on August 19 at 3pm via Zoom.

The programme will cover areas like:
* Haemophilia
* Relationships
* Social Life
* Travel
* Health
* Exercise
* Careers
* I.H.S.

To attend of to find out more info, please contact Robert on 01 657 9900 or at [email protected] (mailto:[email protected])
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Von Willebrand's Disorder (VWD) Information Day 2020

Saturday, August 29 | Castleknock Hotel, Dublin.

The Irish Haemophilia Society are pleased to announce that an information day for people with von Willebrand’s Disorder (VWD) will now take place on Saturday, August 29 in the Castleknock Hotel, Dublin.

This information day will give people an opportunity to gain a better understanding of VWD and the treatments available and an opportunity to get answers to all those unasked questions.

Please note that no charge is applicable on the day but spaces are limited and you must register in advance to attend.

To register online, please click here ([link removed]) or if you would like to book in over the phone or would like more information, please contact the office on 01 6579900

Programme:

12:00 - 13:00 Lunch

13:00 - 14:30 von Willebrand’s Disorder – An update
Speaker: Dr. Michelle Lavin

14:30 - 15:30 Living with von Willebrand’s Disorder
Speakers: Mr. Donal McCann & Ms. Shannon Carey

15:30 - 16:00 von Willebrand’s Disorder and the I.H.S.
Speaker: Mr. Brian O’Mahony
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Summer Mag Out Now!


The latest issue comes packed with loads of interesting articles from members and staff, news and updates, reports from events and more.

In his CEO Report, Brian provides an update on Twinning, Gene Therapy and reports on the WFH Virtual Congress and outlines plans for re-opening the office. Speaking of virtual events, Nina reports from the EHC Women & Bleeding Disorders Virtual Congress 2020.

There are great articles as we catch up with Colm Walsh to find out his new blog, Brian provides an overview of Haemophilia Care in Europe – part one series from the 1970s to the present day – and there is a brilliant piece on the different perspectives of haemophilia; being a parent and the person growing up with a bleeding disorder from Jennie and Evan McBride. There is also a host of updates and news about events, educational grants and more.

Yet another remotely produced and digital only magazine (hopefully the next one will be in print) and we hope you enjoy reading it. You can read it viathe viewer or download the PDF here ([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

So far we have uploaded;
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
* Update on New Children’s Hospital with Eilish Hardiman, CEO
* 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 Discussed with I.H.S. CEO Brian O'Mahony & EHC President, Declan Noone

You can watch them here ([link removed]) .

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Educational Grants 2020
Applications Now Open

We are delighted to announce that applications are now invited for the 2020 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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Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review
2020 – 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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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 given the current situation we find ourselves in but so far we've had to make some changes to our events:

Mild Haemophilia & Haemophilia B Information Day

Date: Saturday 18th July

This event has been cancelled

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

To register online, please click here ([link removed]) or if you would like to book in over the phone or would like more information, please contact the office on 01 6579900

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