Irish Haemophilia Society eZine: July 10, 2020

Irish Haemophilia Society eZine: July 10, 2020
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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

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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Upcoming Webinars

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Saturday July 18 @ 12-2pm: Haemophilia B Webinar
And
@ 3-5pm: Mild/Moderate Haemophilia Webinar

Wednesday July 22 @ 2pm: Gene Therapy Discussion with Declan Noone & Brian O’Mahony

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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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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Mild & Moderate Haemophilia Webinar :: July 18

The Irish Haemophilia Society are pleased to announce that an information webinar for people with mild and moderate haemophilia will take place on Saturday July 18.

This information webinar will give people an opportunity to gain a better understanding of mild and moderate haemophilia, treatments that are available and to get answers to all those unasked questions.

It takes place via Zoom, 3pm – 5pm on Saturday 18 July 2020, and the programme is below.

To attend this webinar, please contact Robert via [email protected] (mailto:[email protected])

Programme:

3pm to 4pm: Mild & Moderate Haemophilia – An update on treatment with Dr. Kevin Ryan, Consultant Haematologist, St. James’s Hospital

4pm to 4.30pm: Living with Mild Haemophilia – A personal perspective with Mr. Brian Byrne, Member of the I.H.S.

4.30pm – 5pm: Questions & Answers.

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Haemophilia B Webinar :: July 18


Haemophilia B (or Christmas disease) is a bleeding disorder whereby there is a deficiency of factor IX. With so many new developments in the pipeline, in relation to haemophilia B, we are pleased to inform you that we have organised an information webinar for people with haemophilia B.

Topics will include an update on treatment and developments, novel therapies and gene therapy. We will also have a personal story from a young adult member of the I.H.S.

Education and information is vital and we would therefore encourage as many of you as possible to join us for the excellent webinar.

It takes place via Zoom, 12 Noon – 2pm on Saturday 18 July 2020, and the programme is below.

To attend this webinar, please contact Robert via [email protected] (mailto:[email protected])

Programme

12 noon to 1pm – Haemophilia B: A clinical update on treatment – Dr. Beatrice Nolan, Consultant Haematologist, CHI, Crumlin)

1pm to 1.30pm – Living with Haemophilia B – A personal perspective (Member of the I.H.S)

1.30pm to 2pm – Questions & Answers.

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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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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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Blood Health 2020

We are delighted to have worked with Health News on their Blood Health campaign once again this year.

A printed publication was enclosed within every copy of the Irish Independent and the content is available online here ([link removed]) .

The campaign featured exclusive content from key thought leaders and industry voices about the impact of Covid-19 on haematology patients, malignancies, thrombosis and more

You can read Brian O’Mahony's piece on how the long-cherished hope of seeing gene therapy for haemophilia is now visible on the horizon, here ([link removed] ) .

#Bloodhealth

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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 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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