The Irish Platform for Patients' Organisations, Science and Industry (IPPOSI), the Genetic and Rare Disorders Organisation (GRDO) and the Medical Research Charities Group (MRCG) invite you to attend a morning meeting on Thursday, 25th February 2010 to mark World Rare Diseases Day.  The meeting "Patients and Researchers: Partners for Life" will commence at 10am.

The meeting will bring together speakers from all sectors in Ireland and Europe to look at diagnosis, treatment and access to medicines for people with a Rare Disease. Ireland is lagging behind the rest of Europe as there is no plan in place for Rare Diseases in this country.  This event aims to bring all relevant and interested stakeholders together to begin to address this deficit and to move this process forward.  

Speakers confirmed to date include: Ms Eibhlin Mulroe, Chief Executive, Irish Platform for Patients’ Organisations, Science and Industry, Mr. John McCormack, Chairperson, Medical Research Charities Group, Ms Barbara Flynn - CEO, The Friedreichs Ataxia Society of Ireland, Ms Anne Lawlor - 22q11 Ireland, Prof Kieran C. Murphy- Chairman, Department of Psychiatry, Royal College of Surgeons in Ireland, Mr Godfrey Fletcher, Chairperson, Irish Platform for Patients’ Organisations, Science and Industry, Prof Jane Farrar - Research Associate Professor, Trinity College Dublin, Dr Jon Beauchamp - Medical Director, Alexion, Ms Avril Daly - Chairperson, Genetic and Rare Disorders Organisation.

Public Information Day

Thursday, February 25

10am-2pm

European Union House, Dawson Street D2

Register to attend by emailing kmunnelly@ipposi.ie or calling 01 407 1629
No Registration Fee for individual patients/scientists, patients’ or scientists’ groups. Optional fee of €50 appreciated from Industry

Patients and Researchers: Partners for Life

10:00am Opening - A Patient’s Perspective, Jo-Ann Sheridan

Session 1
10:10am     Launch of IPPOSI Report from 2009 Joint (IPPOSI/MRCG/GRDO) Rare Disease Day meeting entitled: “Focus on Rare Diseases in Ireland – What is the National Plan?”

Ms Eibhlin Mulroe, Chief Executive, Irish Platform for Patients’ Organisations, Science and Industry

10:20am     Is Research on the Irish Rare Disease Patients’ Groups Agenda?

Session Chair: Mr. John McCormack, Chairperson, Medical Research Charities Group

• Ms Barbara Flynn - CEO, The Friedreichs Ataxia Society of Ireland
• Ms Anne Lawlor - 22q11 Ireland
• Prof Kieran C. Murphy- Chairman, Department of Psychiatry, Royal College of Surgeons in Ireland

11:00am     Q&A
11:15am     Coffee Break

Session 2
11:30am     The Rare Disease Research Journey – “The importance of national and international partnerships between patients, science and industry”

Session Chair: Mr Godfrey Fletcher, Chairperson, Irish Platform for Patients’ Organisations, Science and Industry

• Prof Jane Farrar - Research Associate Professor, Trinity College Dublin
• Dr Jon Beauchamp - Medical Director, Alexion
• Ms Avril Daly - Chairperson, Genetic and Rare Disorders Organisation

12:15pm     Q&A
12:30pm     Lunch and Networking opportunity