Vytenis Andriukaitis, the European Commissioner for Health and Food Safety, released an article on Rare Disease Day 2019, which coincides with the two year anniversary of the European Reference Networks (ERNs).
In this message he talks about Onni, the five year old boy from Finland with a rare form of epilepsy that is featured in the EU protects video (here). He highlights this case as an example of the life-changing help that the ERNs can bring to rare disease patients and calls on all Member States to work towards the integration and accessibility of ERNs in their countries so that all patients in Europe can benefit from these networks of expertise.
Link to full article here