People in Ireland with genetic haemochromatosis are served by the Irish Haemochromatosis Association.
Haemochromatosis is more common in Ireland than in any other country. It is estimated that one in 83 Irish people are pre-disposed to have iron-overload. The population of Ireland is 4.6 million. There are still many people undiagnosed.
Irish Haemochromatosis Association (IHA)
THe IHA was started in 1995 by two Galway sisters who had recently been diagnosed with HH.
There are approximately 1,500 members including 35 nurses. The IHA is totally voluntary and the work is mainly done by the board members .
Aims of the Association
- Greater awareness of Haemochromatosis by the public and the Medical profession
- Improving early diagnosis
- Improvement of treatment facilities and care options for patients
- Equity of access to venesection
- Greater involvements by Health Boards
- Support of patients and their families
The association organises several regional information meetings each year. A National Awareness Day is also held every year and many stands are manned in various venues throughout the country and brochures are distributed to all GP’s and pharmacists as well as to libraries.
The IHA are in constant negotiation with the Minister for Health and the Health Service Executive to ensure equity of access to treatment.
A newsletter is produced and distributed to members three times a year.
The organisation is based in Dublin.