Your monthly digest from the I.H.S.

Irish Haemophilia Society eZine: February 2020
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Von Willebrand’s Disorder Information Day
Saturday April 18, 2020 | Castleknock Hotel, Dublin

The Irish Haemophilia Society is delighted to announce that an information day for people with von Willebrand’s (VWD) will take place on Saturday, April 18th in the Castleknock Hotel, Dublin.

This information day will provide people with an opportunity to gain a better understanding of vWD, the treatments available, services and support provided by the society, and an opportunity to get answers to all those unasked questions.

Please note that no charge is applicable on the day.

If you would like to attend this information day, please contact Aoife in the office on 01 6579900 to book your place, or you can book in online here ([link removed]) .

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AGM & Conference 2020

The AGM & Conference 2020 takes place in the Slieve Russell Hotel, Co Cavan next weekend (March 6th to 8th).

For all of you booked in, we are looking forward to seeing you all in Cavan and for those who can't make it this, we hope to see you at our other events throughout 2020.

We are all really excited for the weekend ahead, you can check out the Adult Programme here ([link removed]) and the Children’s Programme here ([link removed]) - we think it is an exciting programme.

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VHI Women’s Mini Marathon 2020
Registration Now Open

Get those walking/running shoes on ladies, it’s time to start thinking about the VHI Women’s Mini Marathon. The race this year will take place in Dublin on the Bank Holiday Sunday, May 31 2020 at 2pm.

Online registration is open from March 4, so don’t delay register today! Visit vhiwomensminimarathon.ie ([link removed]) to register online or for postal entries fill out an entry form which will be printed in the Evening Herald every Wednesday and Saturday from early March.

Last year’s race saw 25,480 women taking part in the largest women’s event of its kind in the world. This year we are asking for your help to raise funds in aid of the I.H.S. and more importantly raise awareness of bleeding disorders in Ireland.

It is generally perceived that bleeding disorders are exclusively male inherited bleeding disorders, but this is not the case. von Willebrand’s affects both men and women, with over half of the diagnosed patients in Ireland being female. Rarer bleeding disorders also affect females. And while women rarely suffer from severe haemophilia, it is quite common for carriers of haemophilia to have relatively low factor levels (less than 50%) which means that they have mild haemophilia and are a person with a bleeding disorder as well as a carrier.

So ladies, we are looking for GIRL POWER!!! Remember this is a FEMALE ONLY event. If you have a bleeding disorder or if you are the mother, sister, daughter, niece, cousin or friend of a person with a bleeding disorder, now is your chance to show your support by taking part in this year’s VHI Women’s Mini Marathon to raise funds for the I.H.S.

Remember you must register with the event organisers to ensure you get your race number to allow you to take part and to receive your commemorative medal on the day.

To fundraise in aid of the I.H.S. and receive your I.H.S. t-shirt, sponsorship card and details on how to set up a fundraising page online (optional), please contact Nina on 01 657 9900 or email [email protected] (mailto:[email protected])

Thank you!

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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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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.



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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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: I.H.S. Office, Dublin 8

Von Willebrand’s Information Day

Date: Saturday, April 18th
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
&
Haemophilia B 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

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

Barretstown Spring Family Weekends
We just wanted to let you know that there are some spaces left in the following Spring family weekend:

Spring 7: 6-8 March

Spring 8: 13-15 March

Spring 9: 20-22 March

More info here ([link removed])
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.

We can arrange to visit the school and will talk to the teachers and educate them about haemophilia or a related bleeding disorder, and we can also supply the school with publications and info.

We have produced an updated information booklet for teachers & playgroup leaders, which you can read here ([link removed]) .

For more info please contact Robert in the office on 01 657 9900 or [email protected] (mailto:[email protected])
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])

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

** National Haemophilia Council ([link removed])

** Barretstown Camp ([link removed])

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** Citizens Information Bureau ([link removed])
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