Your monthly digest from the I.H.S. 

Irish Haemophilia Society eZine: January 2020
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AGM & Conference 2020

The AGM & Conference 2020 will take place in the Slieve Russell Hotel, Co Cavan over the weekend of March 6th to 8th.

AGM packs have gone out to members via An Post and if you would like to attend this conference, we would advise you to book in as soon as possible to avoid disappointment.

You can view the preliminary Adult Programme here ([link removed]) and the Children’s Programme here ([link removed]) .

FYI: the closing date for registrations is Monday, February 3rd, 2020.

If you would like to attend this conference, we would advise you to book in as soon as possible to avoid disappointment.

To do so, please contact Aoife in the office on 01 657 9900 or return the booking form from your member’s AGM pack (also available here ([link removed]) ), or book in online here ([link removed]) *.

See you all in Cavan!

*Please note, for online bookings, you must pay for the full cost of the conference at the time of booking.

Know Your Flow


knowyourflow.ieis a new, brilliant and easy to use resource that is aimed at helping improve public awareness of bleeding disorders, particularly amongst young women.
Research in the Irish Centre for Vascular Biology, RCSI is focused on improving care for people with bleeding disorders.

The team, led by Dr. Michelle Lavin & Professor James O'Donnell, has identified a common pattern; women who were later diagnosed with bleeding disorders often did not recognise their periods as being heavy.

The Know Your Flow campaign aims to improve recognition of heavy bleeding and diagnosis of bleeding disorders.

You can find out more via the video below, knowyourflow.ie and social media.

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Young Adult Conference 2020
Radisson Blu Hotel, Athlone
April 24 to 26, 2020

We are delight to announce the introduction of the Young Adult Conference 2020, which will take place in the Radisson Blu Hotel, Athlone over the weekend of April 24 to 26, 2020.

This event is open to young adults with any type of bleeding disorders, or carriers, aged from 18 to 30 years.

The conference is free to attend and includes all meals, accommodation etc. however delegates will have to share twin rooms.

Spaces are limited so we would suggest you book early to avoid disappointment.

The closing date for registration in April 3.

This is a fantastic opportunity for our young adults with bleeding disorders and carriers to come together for an interactive, educational and social conference and will give some young adults who attend the opportunity to visit, learn from and share experiences with other haemophilia society’s in Europe as part of the WISH programme.

To book your place, please contact the office on 01 657 9900 or book in online here ([link removed])

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New Booklet for Teachers & Playgroup Leaders



Haemophilia is rare, so teachers and playgroup leaders may not be familiar with the

condition. It is therefore very important that teachers, playgroup leaders, schools

and creches are fully informed of the nature of haemophilia.

Academically, there is no difference between a child with haemophilia or related

bleeding disorder and a child with no bleeding disorder. However, sometimes

children may miss school when they are recovering from a bleed. Haemophilia or
a related bleeding disorder should not interfere with a child’s education.

If your child is starting creche, playschool or primary school and you are a little
worried, we are here to help.

We can arrange to visit the school and will talk to the teachers and educate them about haemophilia or a related bleeding disorder.

We can also supply the school with publications and information to keep them informed.We have produced an updated information booklet for teachers & playgroup leaders, which you can read here ([link removed]) .

If you would like hard copies supplied to your child's school or playgroup, please get in touch with Robert in the office on 01 657 9900 or [email protected] (mailto:[email protected])

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Home Visits 2020

We would like to remind and reassure members of the support that the Society offers to persons with haemophilia, von Willebrand’s disease, related bleeding disorders and to their families on any issue relating to their haemophilia, or their ability to deal with their medical condition.

Our Outreach Co-ordinator Robert is the main point of contact for all our members who need support and assistance, be this queries regarding entitlements, advice, some support or a home, hospital or a school visit.

The Society is aware that not everyone can attend our events for a variety of reasons. However, this does not mean you do not need support. The I.H.S. can arrange a home visit at your convenience - remember, the staff are here for you!
It’s very important for us at I.H.S. to bring support directly to our members.

For more information or to book a home visit in 2020, please contact Robert on 01 657 9900 or [email protected] (mailto:[email protected]) .
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You Make a Difference…We Make It Easier

We provide services and support on so many levels to our members, but we would not be able to provide all this without the funds raised by our members and their family & friends. Take a look at our calendar of events for 2020 ([link removed]) and you will see why we need your help.

We are here to provide support and education to our members with a bleeding disorder and their families. We understand the importance and benefits of giving our members the opportunity to meet as a group at our conferences and information days. Our weekend conferences held in March and October also include 4 children’s groups, ranging in age from 0-17 years. This is a wonderful way for our young members to empower themselves with knowledge and form friendships for support. We are asking for your help, so that we can continue to offer this support.

Fundraising can come in all shapes and sizes, from participating in an organised event or organising your own fundraiser. Check out what organised events are taking place in your area or if you would like to organise your own fundraiser, the I.H.S. are here with advice,

If you would like to fundraise in aid of the I.H.S. in 2020, please contact Nina on 01 657 9900 or email [email protected] (mailto:[email protected])

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Volunteer With I.H.S

We’re owe a huge debt of gratitude to our fantastic team of volunteers & we’re always happy to add to the team!

Would you be interested in getting involved in volunteering with the I.H.S? We are looking for people of all ages and backgrounds to volunteer with us at our events!

Do you enjoy working with kids? Are you good at arts and crafts? Are you a good photographer? Do you have a hobby or skill that you could teach to others?

If so, we would love to hear from you!

Click here for more info ([link removed]) or call Robert in the office on 01 657 9900 or email at [email protected] (mailto:[email protected])

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Hyde Square Apartments

Just to remind you all, that the apartment facility for members in Hyde Square apartments are available to:


▪ 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 in the office 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.



Dates for Your Diary

2020

March:

AGM & Conference

Dates: Friday, March 6th to Sunday, March 8th
Venue: Slieve Russell Hotel, Co Cavan

April:

World Haemophilia Day Event

Date: Friday, April 17th
Venue: TBC

Von Willebrand’s Information Day

Date: Saturday, April 13th
Venue: Castleknock Hotel, Dublin

Young Adult Conference 202

Dates: April 24th - 26th
Venue: Radisson Blu Hotel, Athlone

May

Women & Bleeding Disorders Info Day

Date: Saturday, May 9th
Venue: Hodson Bay Hotel, Athlone, Co. Westmeath

June

Mother & Daughter Overnight

Saturday June 20th & Sunday, June 21st
Venue: Lilliput Adventure Centre

July

Father & Son(s) Overnight

Dates: Saturday July 4th & Sunday, July 5th
Venue: Lilliput Adventure Centre

Mild Haemophilia Information Day

Date: Saturday, July 18th
Venue: Killashee Hotel, Naas

August

Family Day Out

Date: Monday, August 10th
Venue: Dublin Zoo

September

Ageing Event

Date: Saturday, September 19th
Venue: TBC

October

October Conference

Dates: Friday, October 16th to Sunday 18th
Venue: Mount Woseley, Co Carlow

November

Haemophilia B Information Day

Date: Saturday, November 14th
Venue: Hotel Kilkenny

You can keep up to date with the latest I.H.S. info on Facebook ([link removed]) & Twitter ([link removed]) .
Winter Magazine 2019

Click here to read our Winter Magazine 2019 ([link removed]) - it features a host of great articles from members and staff, news, important info on new treatments, upcoming projects and events, and much more.

If you enjoy writing and would you like to contribute an article for the I.H.S., please contact Barry in the office or email [email protected]
New Independent Patient Advocacy Service Launched
The Patient Advocacy Service is a new independent, free and confidential service to assist people to make a complaint about the care they have experienced in public acute hospitals.

More info here ([link removed])
GDPR

The introduction of General Data Protection Regulation (GDPR) came into effect on 25th May, 2018.

GDPR is the EU’s new privacy law and affects every organisation using personal data including the Irish Haemophilia Society.

If you no longer wish to receive communication from us or wish to be removed from our database, please let us know and we will remove your details.

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LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])

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

** European Haemophilia Consortium ([link removed])

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Irish Haemophilia Society
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