Ali imate težave z diagnosticiranjem ali zdravljenjem redke in/ali kompleksne kraniofacialne anomalije ali otorinolaringološkega obolenja? Ali ste zdravstveni delavec, ki išče posebej specializiran nasvet?

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Evropska referenčna mreža za redke in/ali kompleksne kraniofacialne anomalije in otorinolaringološka obolenja


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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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31st European Dysmorphology Online Workshop

3 mei 2021

Registrations for the 31st European Dysmorphology Online Workshop are open! The event will be held on 22-25 September 2021 and is supported by ERN ITHACA.This workshop is an excellent way to bring young clinical geneticists and trained dysmorphologists together to share their professional experiences and present their clinical challenges. Young Geneticists are encouraged to submit a presentation!  Registration Deadline: June 18th. Program & Registration tool following this link:

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ERN CRANIO newsletter (Issue 8)

29 april 2021

Issue 8 of the ERN CRANIO newsletter is now available to read. Click here to read the latest ERN CRANIO updates.

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