The Irish Haemophilia Society provides a range of family services and support to members with haemophilia, von Willebrand’s disorder, 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.
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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 Disorder and other bleeding disorders.
It is important we 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.
World Haemophilia Day
The Society organises an event each year to mark World Haemophilia Day on 17th April.
This Members Conference is 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 which usually takes place each year in early October.
Father & Sons/Mother & Daughters
This is a yearly overnight events that usually 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.
We recognise 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 Children’s Health Ireland at 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. This event will run every three years.
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 days on the following topics each year:
- von Willebrand’s Disorder
This information day aims to give people an opportunity to gain a better understanding of VWD and the treatments available and an opportunity to get answers to all those unasked questions.
- Mild / Moderate Haemophilia
This information day aims to give people an opportunity to gain a better understanding of Mild / Moderate Haemophilia and the treatments available and an opportunity to get answers to all those unasked questions.
- Haemophilia B
This information day aims to give people an opportunity to gain a better understanding of Haemophilia B and the treatments available and an opportunity to get answers to all those unasked questions.
- New treatments & gene therapy
The therapeutic landscape in haemophilia continues to change rapidly and it can be difficult to keep up to date but we endeavour to keep members up to date through info days and webinars on new treatments.