Stichting Pierre Robin Europe

We are a not-for-profit international organization that advocates on behalf of patients suffering from the rare disease, Pierre Robin Sequence / Pierre Robin Syndrome. We collaborate with Pierre Robin Sequence patient groups and clinicians around the world (1) to raise awareness about the rare disease, Pierre Robin Sequence. (2) To share scientifically supported and accessible information about Pierre Robin Sequence with Pierre Robin Sequence patients, their families, and healthcare providers who are treating babies with this rare disease. (3) To provide information on the techniques which currently exist to diagnose Pierre Robin Sequence during the prenatal period; to advocate for the development of a scientifically validated fetal ultrasound screening protocol which can be used by ultrasound professionals around the world to prenatally diagnose Pierre Robin Sequence. (4) To increase access to rare disease care in Europe by means of the EU’s 2011 Directive on Patients’ Rights in Cross-border Healthcare, Regulation 883 on the Coordination of Social Security Systems, and the case-law of the Court of Justice of the European Union; to engage with lawyers, academics and patient advocacy groups on the use of these laws to access highly specialized rare disease treatments; to undertake legal action in the European courts when these laws are not respected. (5) To advocate for patient centered care, and the right to access care, not only for the benefit of babies suffering from Pierre Robin Sequence, but for the benefit of all rare disease patients, wherever they may be.