Irish Haemophilia Society eZine: September 4, 2020

Irish Haemophilia Society eZine: September 4, 2020
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Virtual October Conference

The Irish Haemophilia Society is delighted to announce a Virtual October Conference 2020. The conference will take place via Zoom on Saturday, October 17 & Sunday, October 18; between 10AM & 1PM both days.

The event is free to attend but you must register beforehand. To register your place for the I.H.S. Virtual October Conference 2020 please contact the office on 01 657 9900 or [email protected] (mailto:[email protected]) .

To book your place online, please follow this link ([link removed]) .

Preliminary Programme

Saturday, October 17

10.00 - 11.00 Gene Therapy Update and Discussion
11.00 - 11.45 Hemlibra
11.45 - 12.15 Break
12.15 - 13.00 Treatment Discussion Panel

Sunday, October 18

10.00 - 11.00 Healthy Eating during a Pandemic
11.00 - 11.30 Break
11.30 - 13.00 Exercise and Health

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von Willebrand Disorder Webinar
:: September 29, 2020 ::

We were very disappointed to have had to cancel our von Willebrand Disorder (vWD) Information Day in Castleknock Hotel, in its place however, we have a virtual event.

The I.H.S. is delighted to announce an information webinar on von Willebrand Disorder on Tuesday, September 29, 2020 @ 7:30pm.

Speakers will include Dr Michelle Lavin providing updates & I.H.S. members Donal McCann and Shannon Carey sharing personal perspectives of vWD.

For more information, please contact the office on 01 657 99 00 or [email protected] (mailto:[email protected]) .

Join us via Zoom: [link removed]

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Fundraising Update

Congratulations to Elva O’Neill, one of our young members for her recent fundraiser in aid of the Irish Haemophilia Society. Elva kindly wanted to donate some of her hair to a fantastic charity called the Rapunzel Foundation that makes wigs for people suffering from Alopecia and raise funds for the I.H.S. at the same time.

So on the 4th August, hair appointment made and facemask on, Elva had 14 inches cut off her hair to help others and she also looks great with her new hairstyle. Elva raised a total of €303 in aid of the I.H.S., so a big thank you to Elva from everyone in the I.H.S. for her wonderful support.

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Parents Handbook

As a parent, when a child is diagnosed with a bleeding disorder, you may feel scared, worried and even guilty. It may be an especially hard time for those with no family history of the condition.

It is important to remember that with good treatment the child with a bleeding disorder has every chance of growing up as an active, fit person who can participate in family, school and later working life. Because bleeding disorders are rare conditions parents may feel isolated and alone and it is very helpful to be put in touch with others in a similar position.

The Society offers support and advice to help improve the quality of life for people with bleeding disorders - and we hope that this publication is a useful, reassuring and helpful resource.

If you would like a physical copy, please contact the office on 01 657 99 00. You can read a digital copy 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

A sample of what we have uploaded so far;
* 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
* The Role of the Advanced Nurse Practitioner in Haemophilia with Niamh Larkin, cANP

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

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Educational Grants 2020
:: Applications Deadline Extended to October 5th ::

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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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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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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Upcoming Webinars

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Tuesday, September 29 @ 7:30: von Willebrand Disorder Webinar with Dr Michelle Lavin & I.H.S. members Donal McCann and Shannon Carey.

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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LINKS OF INTEREST
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