3RD IPOPI PID Forum on National Plans for Rare Diseases
On Wednesay, 26th September the 3rd Primary Immunodeficiency Forum organised by the International Patient Organisation for Primary Immunodefiencies (IPOPI) was held at the European Parliament in Brussels, Belgium. Nessa Childers, MEP hosted the event. Forum participants included MEPs, industry representatives, EU commission representative, patients’ representatives and leading physicians and researchers.
The Forum provided an opportunity to shed light on Centres of Reference and Patients’ Registries and to promote the need for EU Member States to develop timely national plans and strategies for rare diseases by the end of 2013.
One of the recommendations made at the Forum was to follow the example of 5 out 27 Member States, such as France (CEREDIH), to create designated centres of reference for Primary Immunodeficiencies. These centres and patient registries contribute to improving care by developing guidelines for good practice and disseminating them within the medical community. It also benefits patients by collecting a full range of expertise in one place to ensure the delivery of the best available treatment that ought to be implemented by other countries. The need for patient registries and the implementation of SCID newborn screening were also highlighted in line with Council recommendations. A more detailed report of the meeting's outcomes and a set of key recommendations will be posted shortly on the website.
Registration No. 1058005