EUROPLAN 2 - Dublin, Sept 7th 2015

This event, hosted by IPPOSI, GRDO and MRCG focused on the challenges experienced to date on the implementation of the Irish National Rare Disease Plan (2014-2018) and on how the plan elements can be turned into a reality that positively impacts on the lives of people living with a rare disease.

Embed

  1. Avril Daly chaired the first session of the EUROPLAN 2 meeting, where she introduced Dr John Devlin (below, far left) from the Department of Health and Dr Derick Mitchell IPPOSI Chief Executive (below, far right), and also Professor Eileen Treacy (below, centre) of the National Clinical Programme for Rare Diseases.
  2. Dr John Devlin spoke first, delivering an update on the plan.
  3. He was followed by Professor Treacy, who spoke at length about the European Reference Networks, which will bring together the best specialists in Europe to tackle rare and complex diseases.
  4. Professor Treacy was followed by Dr Derick Mitchell of IPPOSI who addressed the issue of Orphan Drugs.
  5. And after that the audience got involved in a lively Q&A session. Keep an eye on ipposi.ie and grdo.ie and mrcg.ie for the report arising out of this meeting which will capture the questions and comments that arose from audience members during this session. At the start of session 2, which was chaired by Philip Watt of CF Ireland, Ms Debbie Lambert of the National Rare Diseases Office explained the role and remit of this recently established office in the Mater Hospital. Establishing the office was a key recommendation of the Rare Disease Plan.
  6. After that it was the turn of Dr Avril Kennan (DEBRA Ireland), and she highlighted the importance of research for the rare disease community in Ireland and Europe.
  7. The last speaker was Tony Heffernan of the Saoirse Foundation.
Like
Share

Share

Facebook
Google+