Remarks by President McAleese at the Official Opening of Irish Haemophilia Society’s new Headquarter
Remarks by President McAleese at the Official Opening of Irish Haemophilia Society’s new Headquarter Thursday, 14th June 2007
This is a landmark day for members and supporters of the Irish Haemophilia Society and it is a real delight to have been asked to share it with you. I thank, Chairman, Michael Davenport and the Society for asking me to perform the official opening and in doing so I salute the huge team effort that brought these fine new headquarters into being.
They open in perfect time for next year’s celebration of forty years service by the society to haemophilia sufferers, carriers and their families as well as others with bleeding disorders. It has been a rollercoaster these past four decades with on the one hand huge improvements in treatment and management of the condition and on the other, the appalling story of HIV and Hepatitis C infection as a result of treatment.
This society has been an advocate, champion, guide, friend and support throughout these very heady years. Today thanks to your efforts and those of the medical, pharmaceutical and research professions, the vast majority of people are now treating themselves at home with safe and effective factor concentrates. That fact alone gives people enhanced independence, enhanced safety and control over their lives. Today children with haemophilia can be treated prophylactically allowing them to lead as normal a life as possible blending in more easily with the lifestyles of their friends than in any previous generation.
The state of the art National Centre for Hereditary Coagulation Disorders is another excellent example of improved services and also improved communications between patients and professionals with both actively involved in decision making. Today across many sectors that were previously simply medicalised with expertise flowing only one way, there is a growing recognition that the wisdom, experience and insight of all the constituencies involved is a crucial resource in designing and sustaining the models of practice that work best.
The Society has an important role in shaping haemophilia policy and in advising the Minister for Health on haemophilia policy through the National Haemophilia Council, chaired by the very distinguished Professor John Bonnar. The Society also has a direct involvement in the selection of medications for haemophilia through the Haemophilia Product Selection and Monitoring Advisory Board so ably chaired by National Haemophilia Director Dr. Barry White.
So nationally this Society has already created a stunning legacy of achievement and as a leading player in the World Federation of Haemophilia this society’s international contribution is second to none.
I know this day is more than tinged with sadness at so much grief and loss, so many lives robbed of years they should have lived. There is a plan to a have here, memorial to the ninety-one people who have already passed away and it is right to remember them in such a way but today we honour them with another kind of memorial in these headquarters for it is in and through the work carried out here that a much better future will be crafted for our citizens with haemophilia and related bleeding disorders.
To Michael and Brian O’Mahony, congratulations on these wonderful new Headquarters and, on behalf of all of us who benefit from the Society’s work in seen and unseen ways, I warmly thank Michael and Brian and the members of the Executive for the dedication they have shown over the past number of years in working so effectively with the statutory agencies to ensure the very best service possible for all those with haemophilia. May that partnership flourish in the years ahead.
I wish you all every success in your new Office
THANK YOU