The 3rd International Pierre Robin Sequence Consensus Meeting was an international medical conference which brought together Pierre Robin Sequence experts from all over the world. The conference was held at the Tübingen University Hospital in Germany.
Over the past 20 years, experts at this hospital have developed and scientifically tested the “Tübingen Palatal Plate”. The Tübingen Palatal Plate is a breakthrough non-surgical treatment for babies suffering from Pierre Robin Sequence; Stanford University in California offers the same breakthrough treatment, and other major American university hospitals are currently in the process of adopting it.
The Tübingen Palatal Plate treatment has been medically proven to resolve breathing difficulties, and improve feeding (e.g. 2020, 2019, 2019, 2017, 2017, 2016, 2014, 2011, 2009, 2007, etc.). It allows PRS babies to avoid aggressive surgery, including MDO (mandibular distraction osteogenesis). And it eliminates the need for prone sleeping (sleeping on the stomach). Today prone sleeping has become highly controversial, because it significantly increases the risk of SIDS (Sudden Infant Death Syndrome).
The organizers of the conference invited Pierre Robin Europe to deliver a presentation on Pierre Robin Sequence from the patient’s perspective. Since the audience was composed of Pierre Robin Sequence experts, primarily surgeons and doctors, we did not provide an introduction to Pierre Robin Sequence. Instead of going over the basics, we decided to use our limited time to raise challenging questions which the clinicians could think about after the conference was over. Our presentation discusses evidence-based medicine; access to care; medical ethics; and quality of life. We also briefly mention the first lawsuit ever filed by a PRS family in the European Court of Human Rights. The lawsuit, which was officially supported by EURORDIS, the European Organization for Rare Diseases, was filed on Rare Disease Day, February 28, 2023.