Are you struggling to get a diagnosis or treatment for a rare and/or complex craniofacial anomaly or ear, nose and throat (ENT) disorder? Are you a healthcare professional looking for highly specialised advice?
The European Reference Network for rare and/or complex craniofacial anomalies and ear, nose and throat (ENT) disorders
The Brexit transition period for the United Kingdom expired on 31 December 2020. Regrettably, we have been informed that this marks the end of UK centre participation in European Reference Networks including ERN CRANIO. The ERN status of UK-based patient organisations differs from that of UK healthcare providers and at this stage, patient representatives representing UK patient organisations can participate in ERNs. We are extremely thankful for the commitment of our UK-based healthcare providers to ERN CRANIO, to both its activities and its mission.
This is the title of a recent paper submitted to the Journal of Oral and Maxillofacial Surgery (April 2020). Lead author, Cory Resnick from Boston Children's Hospital/Harvard Medical School discusses this research as part of an interview with Stichting Pierre Robin Europe in order to promote accessibility of the content to patients and families. You can read the full interview here: https://pierrerobineurope.com/prenatal-diagnosis-robin-sequence-dr-cory-resnick/
The 10th edition of the EURORDIS Black Pearl Awards will take place fully online on 24th February 2021, from 5pm CET. You will be able to join the event free of charge from all over the world! Registration will open on 7th January: https://blackpearl.eurordis.org/ The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond (Extract taken from https://blackpearl.eurordis.org/) Photo submissions for the Photo Award 2021 are now open, until 31st January 2021. Click here to find out more.