Irish Haemophilia Society eZine: August 21, 2020

Irish Haemophilia Society eZine: August 21, 2020
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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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WFH Virtual Summit 2020 Review Magazine

Due to the Covid-19 pandemic, the WFH International Congress this year, which was due to take place in Malaysia, was organized virtually in June as a Global Summit.

The event was very successful. We did lose the ability to interact face to face, to meet speakers, to discuss new information together. However, we gained the opportunity for people who would otherwise not have been able to attend due to time or finance constraints to attend. It was also great to see that registration was free of charge, enabling any member of the Society who wished to attend, to do so.

As you would expect, the programme was varied and multidisciplinary with a particular focus on Gene Therapy, Novel current and future therapies. It was good to see a growing emphasis on traditionally overlooked areas of von Willebrands, rare bleeding disorders and women and bleeding disorders receiving more attention.

Over the course of the week, there were 55 sessions with 8551 participants from 159 Countries from across the globe. This attendance included; 1817 haematologists, 1758 from industry, 889 people with bleeding disorder and 477 nurses

This publication is just a snapshot of the week but we hope you find it interesting and informative.

Another digital only magazine and we hope you enjoy reading it. You can read it here ([link removed]) .

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Distance Creates......

A remote arts programme at home for children with long-term health conditions

Join Helium Arts for a 6-week series of homebased creative activities delivered through creative collaboration, step-by-step booklets, fun art packs in the post, and online family sharings.

Artist Chelsea Canavan will lead children aged 6-8 to new dimensions and shared spaces, while artist Ciara Harrison will lead an exploration of the wacky wonderful world around us for children aged 9-12.

Activities will land in your email inbox every Saturday morning.

Dates and Times

Saturday 12 September – Saturday 17 October (6 sessions)

For children with long-term health conditions, aged 6-12 years

The programme is free of charge and is facilitated by a trained and experienced artist.
Participants will receive materials and artwork-in-progress by the artist as well as other participants through the post.

Online Family Sharings will take place on Zoom on Saturday 19 September and Saturday 17 October.

To register for the programme contact:

Helium Arts’ Family Liaison [email protected] (mailto:[email protected]) or 086 8389240

For more info, please see helium.ie ([link removed])

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Von Willebrand's Disorder (vWD) Information Day 2020

Following the government announcement on Tuesday, unfortunately we must cancel our #vWD event that was due to take place on August 29 in Castleknock Hotel.

We are disappointed, however, we will re-schedule for later in the year and let you know the new date when we have one.

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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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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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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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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

Von Willebrand’s Information Day

Date: Saturday, August 29th
Venue: Castleknock Hotel, Dublin
This event has been cancelled

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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LINKS OF INTEREST
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Irish Haemophilia Society
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