Thanks to all who attended our Patient Information Day at the Dundee Science Centre on Saturday.
The day started with a presentation by Dr Ron Kerr from the Dundee Centre, who had a very informative talk on emerging products, including longer acting half life and gene therapy.
In the afternoon, we heard from Declan Noone from the European Haemophilia Consortium (EHC), who presented via Skype. Declan gave a very insightful presentation of the Irish experience of switching to longer acting half life.
Following Declan’s talk, we discussed what we heard and spoke of our hopes and concerns and what Haemophilia Scotland can do to support you. Ideas that were put forward included hosting a day where some of the older boys teach the younger ones how to find veins etc., a buddy system where children/teens/adults look out for and support each other, and an event for younger girls to meet with women to talk about being a woman affected by a bleeding disorder. These are all excellent ideas and we hope to put these recommendations into action. If you have any other suggestions, please let Alex know.
The general mood of the room was optimistic and hopeful. We learnt that medicine is advancing at an exponential rate, that there are treatments out there that are already making a difference, and treatments in the pipeline that could radically change the experience of people with a bleeding disorder for the better. If you have any queries about products, speak to your Haemophilia Centre. The overall consensus was that we can be optimistic for the future whilst being cautious of any unknown adverse side effects of the emerging treatments.
The future is looking brighter.