In light of the ongoing COVID-19 outbreak IPOPI, ESID, INGID, APSID, ARAPID, ASID, LASID & SEAPID is releasing a joint statement on the current epidemics of the new coronavirus (see attachment). We understand that the ongoing situation raises many questions for you and your members and we hope that this statement will answer many of them.
You may find the statement here.
The EU level Call to Action on Newborn Screening for Rare Diseases launched by IPOPI, the European Society for Immunodeficiencies (ESID) and the International Society for Neonatal Screening (ISNS) last December at the IPOPI 13th EU PID Forum is now available for consultation.
The 13th IPOPI EU PID Forum was dedicated to “Newborn screening for rare diseases – A PID perspective” and set the scene for a strong political debate on newborn screening for severe combined immunodeficiencies as well as other severe forms of PIDs (such as complete Di George syndrome). The Call to action was supported by a high number of MEPs including those present at the Forum: Dr Manuel Pizarro (Social-Democrats, Portugal), Ms Tilly Metz (Greens, Luxembourg), Ms Irena Joveva (Renew Europe, Slovenia), Ms Sirpa Pietikainen (European People’s Party, Finland) and Dr Tudor Ciuhodaru MEP (Social-Democrats, Romania).
The Call to Action stresses the need for the development and implementation of overarching guidelines in the field of newborn screening for rare diseases and the creation of a European newborn screening standing committee was observed. This would facilitate the exchange of best practices and recommendations on newborn screening and allow national decision-makers to better access information and solid evidence from other Member States.
11 -13 January 2019
Local and common sessions
Lectures / Workshops / Case studies
View the flyer here
Wednesday 21 November 2018 from 09:00 to 17:45
Thursday 22 November 2018 from 08:45 to 17:00
- Charlemagne Building – European Commission – Gasperi room
- Rue de la Loi 170, 1000 Brussels – Belgium
24 ERNs were launched in March 2017 and are now operational. The ERNs’ system is a successful story. The complexity and ambition of the model implies a continuous and proactive analysis of the many challenges that ERNs are facing in the current deployment phase and those that will arise in the future.
The objectives of this year’s conference are:
- To inform about the state of play of ERNs as a success of cross-border collaboration and new way of delivering healthcare.
- To mark the momentum that ERNs are entering into a new life cycle: the deployment phase.
- To present the main clinical and organisational outcomes of the networks and lessons learnt.
- To identify the main challenges, potential improvements for the functioning and management of the networks and the way forward of the ERN system.
10 delegates from each ERN have been registered for this event and the network will share the outcome of these days with those who were unable to attend.
18th International Conference on Behçet’s Disease, Rotterdam, the Netherlands.
The Erasmus University Medical Center in Rotterdam is a recognized Academic Center of Excellence on Behçet’s Disease in the Netherlands and participates in the European Reference Network in Behçet’s disease.
The international conferences on Behçet’s Disease are always a main event for physicians and researchers interested in Behçet’s disease. The contributors provide top oral presentations and poster sessions of accepted abstracts on a wide range of topics including basic immunology, genetics and clinical innovations. Meet-the-expert sessions will give young physicians an opportunity to share experiences with experts in the field.
5-8 September 2018, Lisbon, Portugal
One year on from their launch, ERNs are treating more than 50 patients with rare diseases. Such is the nature of rare and complex diseases, that specialist knowledge is scarce and fragmented, and therefore often unavailable in the patient’s region or country. Case studies are used in this article by Vytenis Andriukaitis, European Commissioner for Health and Food Safety to demonstrate how this makes ERN work on rare diseases an area of enormous EU-added value; using the EU’s great pool of knowledge and expertise and by connecting our assets through ERNs can bring concrete benefits to many thousands of patients.
27-29 June 2018 – Freiburg, Germany
Friday 7 September 2018 Lisbon, Portugal (as part of the PReS congress)
PReS 2018 – 5-8 September 2018, Lisbon Portugal http://www.pres.eu/pres2018/