Coming together to improve rare disease care
On Monday Sept 7th 2015 I was delighted to attend the Europlan II meeting in Dublin. This meeting focused on the implementation of the National Rare Disease Plan and gave me some insight into the long, and sometimes winding, journey to this point. In attendance was a group of highly intelligent, goal-focused and passionate professionals, family members and patients, all unified in their ambition to see progress. The speakers included our very own Avril Kennan, Head of Research at DEBRA Ireland who has been involved since the early commitment to develop the National Plan was given.
Former Minister for Health, Dr. James Reilly, recognised the importance of developing a National Rare Disease Plan and, under his stewardship, the Plan was published in July 2014. One of the most important recommendations to be implemented to date is the creation of a National Rare Disease Office which was launched in June of this year.
As an advocate for people with EB I was proud to recognise that the EB clinics in St James’ Hospital and Our Lady’s Children’s Hospital Crumlin have met many of the requirements to qualify as Centres of Excellence, in accordance with European Standards. From speaking with other patients at the meeting, I learned that not all people with rare diseases have multidisciplinary teams overseeing their care, as is the case for EB patients. While we are aware of how difficult the EB clinic days can be, we also know that patients and families battling EB have enough of a fight on their hands without having to deal with the added stress of travelling between hospitals to meet all the medical professionals involved in their care. With this realisation, I am now even more firmly of the belief that we owe a huge debt of gratitude to Dr. Rosemary Watson and the teams in both hospitals and the founders of DEBRA, for championing the creation of such clinics.
A lot has been achieved towards improving how people with rare diseases are cared for in Ireland but there is a lot more to do. However, with so many people all working toward the implementation of the plan, all future goals seem possible. To see what is in the plan for yourself, click here.
Fiona Aherne, DEBRA Ireland
Photo caption: Dr. John Devlin, Department of Health, Philip Watt, CF Ireland, Dr. Avril Kennan, DEBRA Ireland, Prof. Eileen Treacy, Temple Street CUH, Avril Daly, Fighting Blindness, Tony Heffernan, Saoirse Foundation and Derick Mitchell, IPPOSI.