A unique partnership of Patients' Organisations, Science and Industry on the island of Ireland.IPPOSI provides a structured way of facilitating interaction between these three key membership groups and where possible with State Agencies on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs in Ireland. Read more...
IPPOSI will be hosting two events in the weeks ahead that you may wish to attend. Both events are open to all IPPOSI members.
The European Federation of Neurological Associations hosted a patient training workshop on pharmaceutical pricing, access and reimbursement on Wednesday April 9. IPPOSI CEO Eibhlín Mulroe spoke at the event about the role of patient advocates in health technology assessments and at the end of the morning session there was a Q&A session that included Professor Charles Normand of TCD and Dr Roisin Adams of the NCPE.
Regarding the NCPE, IPPOSI plans to post notice of rapid review and HTA decisions on our website in the weeks ahead, following redevelopment of this website.
Speaking at the Joint Oireachtas Committee on Health and Children, Minister James Reilly referenced the work being done by the HSE and the Department of Health in scoping the establishment of a national office for rare diseases in Ireland. You can read what he said here - the last five paragraphs of his speech.
Patient advocates are being offered the remarkable opportunity to receive free training (including travel and accommodation) in the complex are of medicines development. The training course will be provided by EUPATI – the European Patients' Academy on Therapeutic Innovation – and will include 150+ hours of e-learning and two face to face sessions in Barcelona, and will cover areas like clinical trials, regulatory affairs, health economics and health technology assessments, among many other topics.
The course has been developed with a view to helping patients effectively engage in the development of new medicines. You can review a more detailed presentation about the course here.
IPPOSI was contacted by a man with a rare condition, 'tracheabroncheomalacia', and he is seeking advice / assistance from anyone who might have direct experience of this condition, or related conditions (laryngomalacia and tracheomalacia), or who has experience of severe respiratory issues and accessing treatment for same.
The man in question is seeking a referral for an operation, however he needs to lose weight for this, and as he is on 24-hour oxygen, exercise is not possible, so any advice on weight loss might also be useful.