Registration is now open for Cystic Fibrosis Ireland’s (CFI) annual conference which will take place in the Mount Wolseley Hotel, Carlow, on Saturday March 30. Titled “2009-2019: A Decade of Progress, but many Challenges Ahead”, the event will be of particular interest to family members, friends and the wider CF community. Registration is now open at www.cfireland.ie.
The conference takes place ahead of CFI’s annual fundraising flag day, 65 Roses Day, on Friday April 12, when people are urged to buy a purple rose for €2 or donate online at 65RosesDay.ie.
The conference provides a chance to reflect on a decade of progress, as well as an opportunity to look to the future and the challenges that lie ahead for people with CF in Ireland.
Among the speakers will be Prof Barry Plant, Cork University Hospital, who will address new CF drug therapies in the pipeline, while Dr Michelle Murray, Mater Hospital, will update on transplants and organ donor consent developments. Other topics will include:
- An update on CF treatment centres, including progress in relation to Beaumont Hospital’s CF in-patient unit
- Difficulties posed by hospital superbugs for patients, and particularly people with CF
- Challenges faced by parents of children newly-diagnosed with CF and supports available
A number of people will also share their experience of living with CF, and how significant strides over the past decade have changed their lives, including well-known cystic fibrosis campaigner Jillian McNulty. There are more than 1,300 people living with CF in this country, with Ireland having the highest incidence per capita in the world, and some of the most severe types.
Philip Watt, Chief Executive, Cystic Fibrosis Ireland, believes that while there have been significant improvements in health services for people with CF, the job is far from done:
“It’s a case of a lot done, but a lot more to do when it comes to ensuring that people with CF experience world-class health services to enable them live their best possible lives. Over the past decade we have seen tremendous progress in the treatment and care of people with CF, including the new CF unit at St Vincent’s University Hospital in Dublin, the approval of new drug therapies such as Kalydeco and Orkambi, and the repatriation of all adult lung transplant services from Newcastle to Dublin’s Mater Hospital. As a result, people with CF are living fuller and longer lives than ever before and so we now need to build on this momentum. We welcome recent commitments from Government to shortly bring legislation before Cabinet for soft opt-out organ donation and we very much look forward to seeing that. We are also conscious that infertility is an issue that affects a high proportion of the CF community and so we would urge the Government to fulfil its promise to provide funding for IVF treatment to support those wishing to start a family.
“The conference will be streamed online at www.cfireland.ie so that people with CF can watch proceedings from the comfort of their own homes. I would encourage everyone to interact as much as possible with the speakers, and help to forge a future for people with CF that we can all be proud of.”
