On Monday, September 7, the second EUROPLAN event for Ireland (EUROPLAN2) took place in The Alexander Hotel, Dublin. EUROPLAN is an initiative of the European Commission (EC) and is designed to support national health authorities to develop plans and strategies for the care and treatment of people living with rare disease. Conferences were organised in 23 European countries.
The EUROPLAN project was formed following the publication in 2008 of the EC communication ‘Rare Diseases – Europe’s Challenges’ and the subsequent council recommendation on an action in the field of rare diseases in June 2009. Both recognised the challenges that exist in this area of health. There are limited numbers of patients, knowledge and expertise and it was singled out as a ‘distinctive domain of very high EU added value’, because resources could be efficiently combined to tackle the issue. It is estimated that 29 million EU citizens are affected by a rare disease, one of the largest health constituencies yet one of the most marginalised communities. Advocacy to make rare diseases a public health priority has been on-going by patient organisations like Fighting Blindness for many years.
Ireland’s first EUROPLAN event took place in January 2011 in Farmleigh House. It brought together a multi-stakeholder audience including patients, clinicians, scientists and industry to discuss issues such as research, orphan drug development and access, Centres of Expertise and European Reference Networks (ERN), patient empowerment and sustainability. This event led to a ministerially appointed steering group charged with the development of an Irish National Plan for Rare Disease. The plan was published by Minister for Health Dr James Reilly in July 2014.
EUROPLAN2 focuses on the implantation, governance, sustainability and oversight of the national plan. Speakers on the day included Chair of the Oversight Committee Dr John Devlin, Department of Health; Philip Watt, CEO of Cystic Fibrosis Ireland; guest speaker Dr Avril Kennan, Research Manager, Debra Ireland; Prof Eileen Treacy, Clinical Lead for Rare Diseases in Ireland; Avril Daly, CEO of Fighting Blindness and EUROPLAN advisor; patient advocate Tony Heffernan, The Saoirse Foundation; and Dr Derick Mitchel, CEO of IPPOSI. A report from the round table event will be included in the EU Committee of Experts on Rare Disease report on state of play in the implementation of Rare Disease Plans across all EU States.