ERN39 March 2017 // The 3rd conference on European Reference Networks (ERN) kicked off in Vilnius, Lithuania. The event focused on the presentation of the 24 newly approved ERNs and brought together a wide range of stakeholders, including patient representatives. ERNs were praised as the future of European cooperation in the area of healthcare in this difficult time for the EU. All participants agreed that ERNs need to be inclusive and patient centred to provide the best possible outcomes. Presentations by selected patients representatives showed that patients were involved every step of the way during the development of their specific ERNs. Nevertheless, it was stressed by the speakers that this is just the beginning and many challenges still lay ahead.

The programme featured speakers from the Commission, the European Parliament, the Lithuanian Ministry of Health, patient representatives, ERN coordinators as well as representatives of the ERN Board of Member States, so the audience was offered a full picture of the ERNs state of play.

IF was represented by its Advocacy Officer Jana Moravcova and by Ammi Andersson, the European Patient Advocacy Group (ePAG) representative for persons with Spina Bifida and Hydrocephalus (SBH), who will sit on the Board of ITHACA, the ERN on congenital malformations and rare intellectual disability. Today, March 10, Ammi is taking part in the first official meeting of ITHACA and will present the SBH perspective with focus on what persons with SBH, and their healthcare providers, expect from this initiative.

IF had meetings with like-minded stakeholders, and with the ITHACA coordinator Dr. Jill Clayton-Smith, to discuss best ways for involvement of the SBH clinicians in the network. At present IF is already an associated group to ITHACA and is proud to have Ammi on the Board to represent persons with SBH. However, it is important that the SBH healthcare providers will be properly represented within the Board of the ITHACA ERN as well.

Read the Press Statement by Vytenis Andriukaitis, European Commissioner for Health and Food Safety, and Christopher Fearne, Minister of Health, Malta

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