Rare diseases are an important area of focus for IPPOSI as it is the primary concern for many of our patient, science and industry members. Go here for the Rare Disease Office homepage.
Over the past few years IPPOSI has taken a leading role in rare diseases through a number of initiatives:
- Co-host / organiser of Rare Disease Day 2016 – all speaker presentations are available here
- Substantial contributions on the development of the National Rare Diseases Plan for Ireland 2014-2018 – published May 2015 (Head of subgroup on Orphan Drugs; member of the steering committee)
- The IPPOSI CEO is a member of the National Rare Disease Plan Implementation Oversight Committee
- IPPOSI assisted and consulted on the launch of the National Rare Disease Office (NRDO) – June 2015
- Consulting on the development of website content for the National Rare Disease Office
- Co-ordinating a round table meeting on Orphan Drugs – February 2015 (Outcome Report)
- Presented to the Joint Oireachtas Health Committee on Orphan Drugs, panel member – November 2018
- Hosted multi-stakeholder Rare Disease Day event in Dublin City Hall in February 2013