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I.H.S. Newsletter 28th March 2017
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Information Meetings:

New Extended Half Life Factor IX concentrate
 
Following a recent tender/procurement process undertaken by the Haemophilia Product Selection Board (which includes both haemophilia doctors and the Society), the recombinant factor IX coagulation factor concentrate used for the treatment of factor IX deficiency will be changed from Benefix to an Extended Half-Life factor IX concentrate called Alprolix for all people with factor IX deficiency who require factor concentrate. This change will take place in May of this year. Each person with factor IX deficiency will be informed about this change by their Comprehensive Care Centre.

The Irish Haemophilia Society, in collaboration with the Comprehensive Care Centres in Dublin and Cork, have organised information meetings for adults with factor IX deficiency and parents of children with factor IX deficiency. These meetings will take place as follows:
 
  • CORK
    Date: Tuesday 4th April 2017 at 6.30pm
    Venue: Kingsley Hotel, Cork.
 
  • DUBLIN
    Date: Wednesday 5th April 2017 at 6.30pm
    Venue: Offices of the Irish Haemophilia Society.

At both meetings, there will be presentations by the clinicians and nurse specialists. Following this we will also have a facilitated discussion to explore attitudes and experiences on factor IX treatment.

We would strongly encourage you to attend these meetings. If you would like to attend, please R.S.V.P. Aoife in the office on 01 6579900.
 

Father and Son(s) Overnight

 

We are pleased to announce details of our first father & son(s) overnight, which will take place over the weekend of 6th & 7th May, 2017 in Lilliput Adventure Centre in Mullingar, Co. Westmeath. The overnight is open to fathers with haemophilia and children with haemophilia aged seven to seventeen. For example: A dad with haemophilia with a son who does not have haemophilia, or a dad who does not have haemophilia but his son or sons have haemophilia, may attend. The cost for the overnight will be subsidised by the Society at €50 per adult and €25 per child. This will include all activities, accommodation on Saturday evening, lunch and dinner on Saturday and breakfast on Sunday. The total cost must be paid in full at the time of booking.

If you and your son(s) would like to attend, please return this booking form by Monday 17th April, 2017.

In relation to accommodation, please note that Lilliput Adventure Centre operate a shared sleeping facility in a dormitory type setting. All bed linen and duvets are provided. More information in relation to what you will need to bring (For example: an old pair of runners, clothes etc.) will be provided with your confirmation letter, which will be sent out to you two weeks prior to this event.

Click here to fill out our online booking form 

Click here to download the booking form for this event


AGM & Conference 2017

We would like to thank everyone who attended this year's AGM and Conference in Slieve Russell Hotel, Co. Cavan.

The event was very successful with a total of 236 delegates in attendance. Topics from the weekend covered the history of the society, carriers, inhibitors, new developments and availability of treatment, new research projects being carried by St. James's Hospital and an update from the Vietnam GAP programme.

The kids groups enjoyed acitivites such as crazy golf, swimming, kids yoga, arts and crafts and exercise sessions. If you would like to view photos or presentations from the weekend, please see below.

Click here for a list of presentations given at the AGM and Conference.

Click here to see photos from the weekend.


Hepatitis C Conference

 

Date: Saturday 13th May 2017
Venue: Castleknock Hotel, Castleknock, Dublin 15


This one‐day conference, (organised by the Irish Haemophilia Society) will be an opportunity for people with Hepatitis C, to receive updates on treatment, how to access treatment and what happens after treatment.

THERE IS NO CHARGE TO ATTEND THIS CONFERENCE BUT REGISTRATION IS REQUIRED. PLACES ARE LIMITED AND WILL BE GIVEN ON A FIRST COME FIRST SERVED BASIS.

Please click here to register.


 


Youth and Junior Membership

 

The Society is fortunate that the children and teenagers who attend our conferences and events play an active and vital role in the organisation now and hopefully in the future. Giving the children and teenagers an opportunity to become members of the Society in their own right gives them a great sense of ownership of the organisation and increases their participation in the organisation.
 
Junior Membership is available for children between the ages of 7 and 12 years, and Youth Membership is available for teenagers between the ages of 13 and 17 years.
 
Parents can sign up on behalf of their child/teenager at I.H.S. events only.

 
Benefits

  • Sense of belonging to the organisation
  • Encourages involvement in the Society
  • Learning about bleeding disorders
  • Taking part in activities and events
  • Newsletters
  • Friendship
  • Community Spirit
 
Youth and Junior members will receive a membership pack including:
  • Welcome letter
  • Latest newsletter
  • Membership card
  • I.H.S. bookmark
  • Haemophilia Heroes Workbook
  • Sibling Superstars (if applicable)
  • I.H.S. self-infusion reward information sheet (junior members only)
  • Dental care tips leaflet
  • 'Become a Junior Volunteer' information sheet (youth members only)

During the year, youth and junior members will also receive:
  • A birthday card
  • Newsletters
  • A self-infusion certificate and gift voucher for Smiths Toy Store, when you start self-infusing (junior members only)
  • Educational Information

For more information, contact Paula in the office on 01 657 9900, paula@haemophilia.ie or at one of our events during the year.

New Board Member

We would like to welcome our new I.H.S. board member, Aislinn Farrelly. Aislinn is a lifelong member of the I.H.S. and has been a loyal volunteer at our events since 2011.

We have no doubt that Aislinn will make a valuable contribution to the board with a unique insight into the youth group and our younger members.
Vhi Women's Mini Marathon

Looking for a challenge this summer or simply some fun in the sun? Join us for our annual fundraiser at the Vhi Women's Mini Marathon, June Bank holiday 2017. 
The event takes place Dublin city centre, attracting thousands of dedicated women to walk, run or jog and raise awareness for a charity of their choice. 
 Signing up online using this link and call Nina in the office on 01 657 9900 to register your interest.
Booking a Holiday

Planning an Easter or Summer holiday? 
Be sure to be prepared with extra factor, all the necessary documents and of course, the I.H.S travel card. Click here for a list of all you will need for your trip, along with some travel tips. 

 Or if you need a travel card sent out to you, give us a call on 01 657 9900 or email info@haemophilia.ie.
 
Connect with Us
LINKS OF INTEREST
Irish Haemophilia Society
World Federation of Hemophilia
European Haemophilia Consortium
Consultative Council on Hepatitis C
National Haemophilia Council
Barretstown Camp
Get Ireland Active
Children in Hospital Ireland
Health Service Executive
Irish Health.com
Citizens Information Bureau 
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






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Irish Haemophilia Society · Cathedral Court · New St, · Dublin 8, Dublin · Ireland

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