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:
Date: Tuesday 4th April 2017 at 6.30pm
Venue: Kingsley Hotel, Cork.
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.