Conferences & Events
The Irish Haemophilia Society provides a range of family services and support to members with haemophilia, von Willebrand’s disease, related bleeding disorders and to their families and other members, including health care workers. In planning the programmes for our conferences & meetings we take cognisance of the evaluation and feedback we receive from previous conferences. We look at current trends, future projected requirements, international developments and we also work closely with key staff from the haemophilia treatment centres to ensure that our programmes encapsulate priority areas of work and development.
Annual General Meeting & Conference
The AGM and Conference is the major event on the Society’s calendar. It is attended by a large number of parents, persons with haemophilia and members of the Society. The Annual General Meeting and the business meeting of the organisation generally gets a very good attendance and a lot of discussion relating to the programmes and activities of the organisation.
For the conference itself, we always put in place an interesting and varied programme which gives those attending an opportunity to be updated on various aspects of haemophilia, von Willebrand’s disease and other bleeding disorders. It is our aim as an organisation to provide services and support to all members of the family with haemophilia and to include persons with haemophilia and related bleeding disorders from the youngest age. For this reason, every conference will have a main programme which is geared towards the adults and separate programmes for our four main children’s groups, which involves activities with educational sessions, group discussions and team building. Our Youth Group is for teenagers & young adults aged between 13 – 17 years old. There is a Kidlink programme for children aged from 8 to 12 years which aims to bring them together in a supportive and enjoyable atmosphere. Again for the Kidlink programme, there is a certain amount of educational sessions which are put across in a fun way, such as through quizzes and games. The Cubs group is for children aged between 4 – 7 years old and their programme involves much the same as the Kidlink and Youth with age appropriate educational sessions mixed in with fun and physical activities. It has been our experience over the last sixteen years that as the children with haemophilia go to meetings and they make friends with other children with haemophilia or carriers, the level of peer support and acceptance of their condition increases and we are now in a position where the leaders of our youth programmes have themselves come through the Kidlink and Youth programmes. Our AGM & Conference takes place over the first weekend in March, every year.
World Haemophilia Day
The Society organises an event each year to mark World Haemophilia Day on 17th April.
This Members Conference, piloted in 2006, is now well established on our annual calendar of events. The members see this as a less formal conference with more proactive participation by members as speakers and it is correctly seen as complementing the AGM and Conference. The lectures and sessions are more focused on sharing of personal experiences and empowerment by example. The lecturers, where possible, come from within the membership and an objective is to improve and add to each person’s perception of their bleeding disorder by contextualising their experience in light of the real examples and stories they listen to during the course of the weekend. Sessions that often feature at the Members Weekend include an Open Forum as well as the ever popular debate. This conference usually takes place each year in early October.
Father & Sons/Mother & Daughters
This is a yearly overnight event that takes place in Lilliput Adventure Centre.
Ageing with a bleeding disorder has become a focus in the international community over the last number of years as we are now seeing, in developed countries, the first generations of people with severe bleeding disorders whose life expectancy is the same as the general population. This does mean that they are also starting to face the medical issues that the general population have been dealing with for years. However, there are a number of additional considerations that people with bleeding disorders need to account for when dealing with issues. This has been a key focus for the Irish Haemophilia Society, firstly with the publication of the “Ageing and Haemophilia” booklet and secondly with the first ever “Ageing Conference” in 2014.
The Parents Weekend was piloted in 2009 by the Society. We recognised that for parents who have children with haemophilia, especially young children, there is a need for education, information and peer support. The Parents Conference, which was organised in conjunction with the haemophilia care teams in St. James’s Hospital and Our Lady’s Children’s Hospital Crumlin, provided such an opportunity for the parents. It is our view, endorsed by the health care workers, that the parents will learn as much from each other and from their experiences with raising children with haemophilia as they will from the health care workers. However, in 2016 we had a 40% decrease in attendance compared to the previous year. We decided not to run this conference in 2019 and instead to include some of the topics in the programme for the October Conference. We will be reviewing this again at the end of the year.
Carriers of haemophilia not only carry the condition but have their own symptoms and emotions to deal with. The Irish Haemophilia Society organises a Carrier Conference every second year to help promote awareness of the needs of carriers as well as serving as an educational and informative meeting. The conference features information on carrier testing, family planning, pregnancy, menopause, positive living and dental care.
The conference is open to females aged 16 years and upwards. However, under 18’s must be accompanied by a parent or guardian and takes place every second year.
The Society organises information meetings on the following topics each year:
– von Willebrand’s Disease
– Mild / Moderate Haemophilia
– New treatments & gene therapy
– Haemophilia B
Barretstown is a specially-designed camp for children and families affected by serious illnesses and life-long conditions such as haemophilia. The Barretstown programme is based on an approach known as Therapeutic Recreation. This approach offers children and their families time to enjoy fun activities while all the while exploring 4 main areas of personal development – Challenge, Success, Reflection and Discovery.
Family weekends are 3 days in length and involve the whole family. Again, through the therapeutic recreation programme parents and children alike take part in the various activities Barretstown has to offer in an encouraging, safe and fun environment. This gives the family time together to have fun and relax away from the pressures of everyday life.
Siblings are also offered the opportunity to attend Barretstown – there is a specific camp for siblings of a child with a bleeding disorder. This allows the sibling to experience the same activities and environment as their brother/sister which is an excellent way of including the whole family.
Barretstown is a completely free service backed by a fully qualified medical team. If you think your child/children may be interested in attending a camp in Barretstown or you would like to attend a family camp please contact Rob in the office on 01 657 9900 for further information.