Founded in 1968, the Irish Haemophilia Society is celebrating its 50th year in existence today, Saturday April 14th and tomorrow, Sunday April 15th by hosting their Annual Conference at the Royal Marine Hotel in Dun Laoghaire.
Later this afternoon, at 12:30pm, the Minister for Health, Simon Harris will officially launch the two-day conference to shed light on the society’s ethos and create further awareness on the genetic blood disorder known as haemophilia.
A press briefing is scheduled for 12:45pm, following the ministers announcements.
“The 50th anniversary of the organisation is a celebration of the resilience of the haemophilia community in Ireland” said Brian O’Mahony, CEO of the Society.
“At this milestone in our history, we remember the struggles of the past and we can look with confidence to the future” added Mr. O’Mahony.
Haemophilia in the general population is found in 1 in 10,000 (therefore about 1 in 5,000 of the male population has haemophilia).
The disorder is essentially a defect in the clotting mechanism of the blood. A common symptom is that people with haemophilia bleed for longer periods of time than people whose blood factor levels are normal.
A person who is born with haemophilia will have it for life. In a large amount of cases, haemophilia is passed down from parent to child, however this isn’t always the case. It is thought that at least 30% of people with haemophilia have no family history of haemophilia.
There has been a dramatic improvement in haemophilia treatment in recent years. In the 1970’s, many of the medicines used to treat haemophilia were contaminated with HIV and / or Hepatitis C, leading to the death of 115 people with haemophilia from the early 1980s to date.
Safer treatments were available from the 1990’s and children born with haemophilia today have a normal life expectancy and near normal quality of life. In 2016, following several years of advocacy and access to treatment, the scourge of Hepatitis C infection was eradicated in the haemophilia population in Ireland.
In 2017 and 2018, Ireland has become the first country to provide treatment to all people with haemophilia using the new longer acting factor concentrates. These innovative medications require less frequent intravenous infusions and provide more protection against bleeding episodes.
Minister for Health, Simon Harris said:
“The Irish Haemophilia Society has worked for 50 years to build a strong and vibrant community for people with haemophilia in Ireland. Their long history of close engagement with the Department of Health and the HSE to advocate for the best outcomes for people with haemophilia continues to drive Ireland to lead the way in improvements to haemophilia treatment.”
At present, several people with haemophilia in Ireland are currently on clinical trials for new innovative treatments of the disorder.
“Gene therapy offering a potential cure for haemophilia is currently under development in clinical trials and we expect Irish people with haemophilia to start participation in these clinical trials this year” concluded Brian O’Mahony.