IPPOSI

On Monday the 11th of June, 2012 at 10am, the Department of Health's Consultation Day on a National Rare Disease Plan for Ireland took place at Farmleigh House in the Phoenix Park. This event followed the Minister for Health, Dr James Reilly's decision last April to appoint a National Rare Diseases Steering Group in order to develop a national plan for rare diseases. Similar plans are being drafted across the EU following a recommendation by the European Council of Health Ministers which requires Member States to implement national plans before the end of 2013. The launch of the online consultation process offers people with a rare disease and their families the opportunity to contribute to the formation of the plan. The online consultation process will last for four weeks and can be accessed by visiting  http://www.hse.ie/eng/services/ysys/Consultation

Members of the National Rare Diseases Steering Group - 

Prof Eileen Treacy, Health Service Executive,  Ms. Caroline Kelly, Department of Health, Mr John McCormack, The Medical Research Charities Group, Ms Eibhlín Mulroe, The Irish Platform for Patients’ Organisations Science and Industry, Mr Tony Heffernan, Patient Representative (Bee for Battens, Dr Helen McAvoy, Institute of Public Health in Ireland. Minister of Health, Dr James Reilly TD, Ms Avril Daly, The Genetics Rare Disorders Organisation, Mr Owen Metcalfe, Institute of Public Health in Ireland, Dr John Devlin (Chair), Department of Health, Mr Shaun Flanagan, Health Service Executive, Dr Catherine Gill, Health Research Board.

Eibhlin Mulroe CEO, IPPOSI welcomes the Minister of Health to Farmleigh

On his first official visit to Dublin, the UK Deputy Prime Minister, Nick Clegg came to University College Dublin to meet with academics, researchers, patient organisations and individuals taking part in studies led by the university.

The leader of the Liberal Democrats was accompanied by the Minister for Enterprise, Jobs and Innovation, Richard Bruton, TD, and the President of UCD, Dr Hugh Brady and was introduced to IPPOSI by Dr Stephen McDonough, GSK. IPPOSI was represented by CEO, Eibhlin Mulroe and Directors, Prof. Seamas Donnelly and Ms Margaret Webb.

The IPPOSI Lunch Talk Series organises presentations from a number of prominent speakers on areas of interest to IPPOSI Members and stakeholders.

May 2009 - Access To Medicines

The first of the IPPOSI Lunch Talks took place on Thursday the 28th of May 2009 in European Public Information Centre (EPIC), EU House, 18 Dawson St.

This Lunch Talk addressed the issue of Access to Medicines. Guest speaker was Mr Ross Hattaway, Corporate Pharmaceutical Unit, HSE and the outcome report from the IPPOSI meeting 'Access to Medicines and New Medical Technologies in the Era of Health Technology Assessments in Ireland' was launched at this event.

Former Fair City actress, Joan Brosnan Walsh helped launch Rare Diseases Week 2009 which ran from Saturday 21st February until Saturday 28th February to highlight issues faced by patients with rare diseases and disorders.

The 'Clinical Research Infrastructure in Ireland - Remaining Barriers, Potential Solutions' conference took place in Dublin Castle on the 13th May 2008. For the outcome report, click here.

On Monday 24th November 2008, a major international conference was held in Croke Park, Dublin by IPPOSI and addressed by Minister for Children and Youth Affairs, Barry Andrews TD. This conference examined the role of Health Technology Assessments (HTAs) and their impact on Ireland's healthcare system.

IPPOSI brought together experts from science, industry, patient groups/medical charities and other key stakeholders to look at patient registries in Ireland. The event took place on Monday 22nd September 2008 in the Clarion Hotel IFSC.