Irish Haemophilia Society E-zine: Oct 2, 2020

Irish Haemophilia Society eZine: Oct 2, 2020
View this email in your browser ([link removed])
[link removed]
Educational Grants 2020

:: Applications Deadline is This Monday, 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])
[link removed]

Upcoming Webinars

Continuing with our series of Webinars and Q&A Sessions, we have further meetings coming up on;
Wednesday, October 21 @ 6PM: An Update on the NCC with Dr Niamh O'Connell

Wednesday, October 28 @ 6pm: An Update from CHI at Crumlin with Dr Beatrice Nolan

Wednesday, November 4 @ 6pm: Ageing & Bleeding Disorders with Prof. Mike Makris

To join us for any of these meeting, please use the link & meeting ID below:

Join Zoom Meeting
[link removed]
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.

[link removed]


Virtual October Conference
- Limited Spaces Still Available -

We've have a limited number of spaces available for the Irish Haemophilia Society 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]) .

There is an Interactive Session on Sunday morning, the society will post a TheraBand / Consent Form. This form must be completed, signed and returned to us by October 15. Details for the event will be sent to those of you have already registered, next week.

Preliminary Programme

Saturday, October 17: 10.00 - 13.00

10.00 - 11.00 Gene Therapy Update & Discussion
Speakers: Prof. Mike Makris and Brian O’Mahony
11.00 - 11.45 Hemlibra
Speakers: Dr Niamh O Connell & Dr Beatrice Nolan
11.45 - 12.15 Break
12.15 - 13.00 Treatment Discussion Panel
Gene Therapy Brian O’Mahony
Hemlibra - David Flanagan
EHL Factor - Colm Walsh
Plasma derived VWF - Luz Maria Heaney

Sunday, October 18: 10.00 - 13.00

10.00 - 11.00 Healthy Diet in a Pandemic
Speaker: Ms. Didi de Zwarte, Registered Dietician
11.00 - 11.30 Break
11.30 - 13.00 Exercise & Health (Interactive Session)
Speakers / Facilitators: Sheila Roche, Mark McGowan & Paula Loughnane

[link removed]
EHC 2020 Annual Virtual Conference
October 5 - 9

The European Haemophilia Consortium (EHC) is delighted to welcome you to its 2020 Annual Virtual Conference, taking place October 5 - 9.

This year’s event will be held virtually to ensure the safety of our community. However, a different format doesn’t mean less content, and furthermore, because of this virtual format, the EHC can welcome all for free!

While it is free to attend, you must register beforehand, and you can do so here ([link removed]) .

Take a look below at our full conference programme and do not hesitate to get in touch with our Conference Organisers for further information.

[link removed]


KIDS Virtual Conference

We are delighted to announce a Virtual Conference for young I.H.S. members on Saturday, November 7, 2020.

With the October Conference taking place virtually this year we wanted to make sure that our young member's are not left out. Hopefully this is an opportunity for fun and learning and to connect with friends at the same time.

The provisional programmes are below and for more details, please contact Robert on (01) 657 9900 or [email protected] (mailto:[email protected])

Cubs (For Ages 4 - 7) - Time: 11:00 - 11:55
* Draw What You Hear
* Wildlife Adventure
* Crazy Quiz
* Lets Talk About Teeth

Kidlink (For Ages 8 -12) - Time 12:00 - 12:55
* Draw What You Hear
* Travel The World From Your Couch
* Crazy Quiz
* Making A Movie!
* Name That Veg
* Time To Exercise

Youth Group (For Ages 13 - 17) - Time: 13:00 - 14:30
* Draw What You Hear
* Travel Ireland From Your Couch
* Crazy Quiz
* Making A Movie!
* Guest Talk
* Time To Exercise

[link removed]
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]) .

[link removed]

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]) .

[link removed]

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]) .

[link removed]

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.

============================================================
** Connect with Us ([link removed])
** [link removed] ([link removed])
** [link removed] ([link removed])
** [link removed] ([link removed])
** Email (mailto:Mailto:[email protected])
** LinkedIn ([link removed])
LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])

** World Federation of Hemophilia ([link removed])

** European Haemophilia Consortium ([link removed])

** Consultative Council on Hepatitis C ([link removed])

** National Haemophilia Council ([link removed])

** Barretstown Camp ([link removed])

** Get Ireland Active ([link removed])

** Children in Hospital Ireland ([link removed])

** Health Service Executive ([link removed])

** Irish Health.com ([link removed])

** Citizens Information Bureau ([link removed])
Copyright © 2016 Irish Haemophilia Society, All rights reserved.
As a member of the Irish Haemophilia Society you have agreed to be on a mailing list from which you will receive monthly eZines from the IHS.

Our mailing address is:
Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin
Ireland

This email was sent to [email protected] (mailto:[email protected])
why did I get this? ([link removed]) unsubscribe from this list ([link removed]) update subscription preferences ([link removed])
Irish Haemophilia Society . Cathedral Court . New St, . Dublin 8, Dublin . Ireland

Email Marketing Powered by Mailchimp
[link removed]