In addition to our efforts directly related to progressing EB research we also undertake advocacy related to improving health research in a broader sense. Research advocacy is primarily undertaken through Health Research Charities Ireland (HRCI) with which we are very closely involved. Together with the excellent staff members of the HRCI, this group comprises a large group of motivated and talented representatives from a variety of charities with an interest in health/medical research.

We work together to improve the amount and quality of patient-focused research that is undertaken in Ireland. We also work to improve policy which has an impact on health research and to ensure that the patient voice is front and central in all relevant discussions. For more on the work of the HRCI, please visit their website (Home – (

We also work closely with the Irish Platform for Patient Organisations, Science and Industry (IPPOSI), in their aim to bring together all the key stakeholders, with the aim of smoothing the path for the development of new medicines and therapies and to ensure early access to them, for Irish patients. For more on the work of IPPOSI, please visit their website (Home – IPPOSI).