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?

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The European Reference Network for rare and/or complex craniofacial anomalies and ear, nose and throat (ENT) disorders


Latest News


EURORDIS Black Pearl Awards 2022 & Photo award

10 January 2022

  EURORDIS Black Pearl Awards 2022 The eleventh edition of the Black Pearl Awards will take place online on TUESDAY, 8th FEBRUARY 2022 from 18:00 until 19:30 CET and will bring together persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals, industry representatives, and more. The February event is an annual awards ceremony launching the month of Rare Disease Day. Since 2012, EURORDIS Rare Diseases Europe has organised this event to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policymakers, scientists, companies, and media who strive to make a difference for the rare disease community. Click here to find out more and to register.  Photo Award 2022 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. The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each reflecting the drive of people living with a rare disease. Submissions for the 2022 Photo Award will be open until 16 January 2022. Click here to submit your photo.

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ERN CRANIO newsletter (Issue 10)

23 December 2021

  The ERN CRANIO newsletter (Issue 10: December 2021) is now available to read.  Click here to read the latest ERN CRANIO news, including information on the integration of new ERN CRANIO members in 2022.   

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EURORDIS Black Pearl Awards 2022

7 September 2021

It's nominations time again! Don't miss your chance to nominate your star of the rare disease community, or enter yourself, for one of the EURORDIS Black Pearl Awards 2022. The 12 award categories recognise the outstanding efforts of individuals, organisations, companies, researchers, scientists, media, and policy makers in bringing about change to improve the lives of the 30 million people in Europe and 300 million worldwide living with a rare disease. Nominations can be submitted from anywhere in the world. Among all the nominations received, the EURORDIS Board of Directors will select the awardees in October 2021. EURORDIS has partnered with Orphanet for the evaluation of the Scientific Award nominations and with Medtech Europe for the Company Award for Health Technology. A few finalists will be selected for the Young Patient Advocate Award and the Social Media Award, for which the winners will be determined by a public vote. The awardees will be presented with their awards at the official Ceremony next February, to mark the occasion of Rare Disease Day.  Nominations deadline: 10th September 2021. Read more and nominate here!

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