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 8th International Conference on Ectodermal Dysplasia will take place in Paris on 9th-11th June 2022. Oro-dental anomalies are a major concern in Ectodermal Dysplasias (ED). Two main sessions in the conference programme are devoted to dental care and mouth-related issues, which may be of interest to ERN CRANIO clinicians. Click here for more information and to register.
On Monday 14th March 2022, the 24 European Reference Network (ERN) Coordinators issued a statement of support to people with rare diseases and complex conditions affected by the current war in Ukraine. As detailed in this statement, the ERNs have launched a new dedicated website (accessible in most EU languages, in Ukrainian and in Russian) and social media campaign to support patients with rare diseases from Ukraine and their care providers. Each European Reference Network (ERN) is focused on a different rare and complex disease area. Each ERN is made up of expert healthcare professionals from specialised healthcare providers across Europe. The dedicated website provides a contact point for each ERN, a list of member hospitals and useful links. We are here to help.
📚New European Joint Programme-ERN workshop! 🎯Objective: to give an update on translational research on bone impairment in rare diseases and bring together experts and trainees to facilitate collaborations. 📆Registration deadline: 27 March 2022. Attendees must be affiliated to an ERN-Full Member or Affiliated Partner institution. ℹ️ More information: https://ejprarediseases.org/event/ejp-rd-ern-workshop-translational-research-on-bone-impairment-in-rare-diseases/