European Rare Diseases Day - Joint Initiative Information Day
IPPOSI, MRCG and GRDO
Thursday 25th February 2010, 10am – 2pm
European Public Space, European Union House, 18 Dawson Street, Dublin 2
For the meeting agenda, click here.
For Minister Aine Brady's Speech, click here.
PATIENTS AND RESEARCHERS: PARTNERS FOR LIFE
Research represents hope for the millions of rare disease patients who are without cure today. In Ireland, 140,000 people are affected by a rare disorder but as many as 200,000 additional individuals could unknowingly have a rare condition. Having a National Rare Disease Plan would be an important step towards establishing a systematic and coordinated approach to dealing with some of the many challenges posed by rare conditions. In the context of research, collaborating with other Member States is crucial in the drive to link Rare Disease patients with relevant research activities. In the last decade, huge leaps have been made in genetics and medical technology; raising great hopes from scientific and therapeutic progress.
The event on the 25th February gathered together speakers from patients’ groups, science and industry to discuss the theme Patients and Researchers: Partners for Life.
- Speakers from our patient groups described the importance of research in their lives and their relationship with researchers.
- Researcher’s including Prof Kieran C. Murphy, Chairman of the Department of Psychiatry, RCSI presented on the importance of strong relationships with the patient.
- Dr Jon Beauchamp, Alexion outlined industry’s involvement in research into Rare Disease conditions and in the delivery of treatments to patients in Ireland.
In addition, Eibhlin Mulroe, CEO, IPPOSI launched the IPPOSI consensus report from the 2009 Rare Disease Day meeting:
FOCUS ON RARE DISEASES IN IRELAND– WHAT IS THE NATIONAL PLAN?
Key Recommendations:
1. Ireland must develop a comprehensive National Plan for Rare Diseases;
2. Ireland needs to engage in, and cooperate with, European and International
initiatives;
3. Support and Protect Research;
4. Incentivise Orphan Drug Development and cultivate supportive mechanisms
for orphan drug access;
5. Support Rare Disease Patient Organisations.
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