ERN EYE
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Meet the working groups leaders - Pr Elfride de Baere and Dr Susanne Kohl, WG leaders of TWG6
ERN-EYE has launched a series of interviews with the working group leaders. In these short videos you will find out what are the main activities and goals of each working group.
For this fourth video, meet Pr Elfride de Baere, Ghent, Belgium, and Dr Susanne Kohl, Tübingen, Germany, leaders of the TWG6 on Genetic Testing.
Watch all videos on www.ern-eye.eu
Переглядів: 32

Відео

Season's greetings from the ERN-EYE Management Team
Переглядів 7521 день тому
The ERN-EYE Management Team wishes you a happy new year 2025!
Watch the best moments of the ERN-EYE Scientific Workshop 2024 in Madrid!
Переглядів 47Місяць тому
Watch the best moments of the ERN-EYE Scientific Workshop 2024 in Madrid!
ERN-EYE webinar - Usher Syndrome
Переглядів 381Місяць тому
Programme - Introduction of the speakers, Pr Katarina Stingl, University Tübingen, Germany. - Clinical aspects of Usher syndrome, Pr Katarina Stingl, University Tübingen, Germany. - Disease progression of USH1B and Implications for Gene Therapy, Pr Francesca Simonelli, University of Campania Luigi Vanvitelli, Naples, Italy - What is relevant for patients and their families, Dominique Sturz, ERN...
ERN-EYE eLearning - Teaser
Переглядів 36Місяць тому
ERN-EYE eLearning - Teaser
Best-of EURETINA 2024
Переглядів 393 місяці тому
Best-of EURETINA 2024
Best-of ESHG, EUNOS and RIWC 2024
Переглядів 256 місяців тому
Watch the best moments of the June Congresses!
ERN-EYE Webinar - Diagnostics and Management of Leber Hereditary Optic Neuropathy
Переглядів 3896 місяців тому
PROGRAMME - Introduction of the speakers, Pr Marko Hawlina, Eye Hospital, University Medical Centre Ljubljana, Slovenia - Genetics and pathogenesis, Pr Martina Jarc Vidmar, Eye Hospital, University Medical Centre Ljubljana, Slovenia - Clinical picture and differential diagnosis, Pr Martina Jarc Vidmar, Eye Hospital, University Medical Centre Ljubljana, Slovenia - Atipycal presentations and prev...
ADhoc - Serious Game for healthcare professionals on announcing a diagnosis of Rare Diseases
Переглядів 1,5 тис.10 місяців тому
The French rare diseases network SENSGENE has created an innovative and didactic Serious Game called ADhoc. The aim is to raise awareness among healthcare professionals of all ages and specialties about best practices when announcing a diagnosis of rare diseases. Following the great success encountered in France, the European Reference Network ERN-EYE is now launching the English version to ben...
SEEMYLIFE - RESEARCH PROJECT
Переглядів 21411 місяців тому
“See My Life”: an international multidisciplinary research project to assess the quality of life of children with visual impairment due to a rare eye disease. In Europe, rare eye diseases are the leading cause of severe visual impairment/blindness in children. This severe or total visual impairment may be accompanied by psychological distress for the children concerned and has a considerable im...
SEEMYLIFE - FORSCHUNGSPROJEKT
Переглядів 8011 місяців тому
„SeeMyLife“: ein internationales multidisziplinäres Forschungsprojekt zur Bewertung der Lebensqualität von Kindern und Jugendlichen mit Sehbehinderung aufgrund einer seltenen Augenkrankheit. In Europa sind seltene Augenkrankheiten die Hauptursache für schwere Sehbehinderungen/Blindheit bei Kindern. Diese schweren oder vollständigen Seheinschränkungen können für die betroffenen Kinder mit psychi...
SEEMYLIFE - PROJET DE RECHERCHE
Переглядів 7911 місяців тому
« See My Life » est un projet de recherche multidisciplinaire international visant à évaluer la qualité de vie des enfants ayant une déficience visuelle due à une maladie rare de l'œil. En Europe, les maladies rares de l'œil sont la principale cause de déficience visuelle ou de cécité grave chez les enfants. Cette déficience visuelle sévère ou totale peut s'accompagner d'une détresse psychologi...
SEEMYLIFE - PROGETTO DI RICERCA
Переглядів 12011 місяців тому
“See My Life”: un progetto di ricerca multidisciplinare internazionale per valutare la qualità della vita dei bambini con disabilità visiva dovuta a una rara malattia agli occhi. In Europa, le malattie rare degli occhi sono la principale causa di grave deficit visivo/cecità nei bambini. Questo deficit visivo grave o totale può essere accompagnato da un disagio psicologico per i bambini interess...
SEEMYLIFE - PROJEKT BADAWCZY
Переглядів 5011 місяців тому
„See My Life”: międzynarodowy multidyscyplinarny projekt badawczy mający na celu ocenę jakości życia dzieci z wadą wzroku spowodowaną rzadką chorobą oczu. W Europie rzadkie choroby oczu są główną przyczyną poważnych zaburzeń widzenia/ślepoty u dzieci. Temu poważnemu lub całkowitemu upośledzeniu wzroku może towarzyszyć dyskomfort psychiczny danych dzieci i ma on znaczący wpływ na jakość życia ic...
SEEMYLIFE - ONDERZOEKSPROJECT
Переглядів 6811 місяців тому
“See My Life”: een internationaal multidisciplinair onderzoeksproject om de kwaliteit van leven van kinderen met een visuele beperking als gevolg van een zeldzame oogziekte te beoordelen. In Europa zijn zeldzame oogziekten de belangrijkste oorzaak van ernstige slechtziendheid/blindheid bij kinderen. Deze ernstige of totale visuele beperking kan gepaard gaan met psychische problemen voor de betr...
SEEMYLIFE - TYRIMŲ PROJEKTAS
Переглядів 2411 місяців тому
SEEMYLIFE - TYRIMŲ PROJEKTAS
Season's greetings from the ERN-EYE Management Team
Переглядів 93Рік тому
Season's greetings from the ERN-EYE Management Team
ERN-EYE Webinar - Paediatric Cataracts
Переглядів 294Рік тому
ERN-EYE Webinar - Paediatric Cataracts
Webinar for the presentation of one of the 24 ERNs on rare diseases, Retina Bulgaria
Переглядів 98Рік тому
Webinar for the presentation of one of the 24 ERNs on rare diseases, Retina Bulgaria
Best-of - ERN-EYE at EURETINA 2023
Переглядів 63Рік тому
Best-of - ERN-EYE at EURETINA 2023
Usher Syndrome: Guidance for healthcare providers - Video about Do’s and Don’ts!
Переглядів 405Рік тому
Usher Syndrome: Guidance for healthcare providers - Video about Do’s and Don’ts!
Meet the working groups leaders - Dr Agnese Suppiej & Pr David Keegan, working group leaders of TWG5
Переглядів 47Рік тому
Meet the working groups leaders - Dr Agnese Suppiej & Pr David Keegan, working group leaders of TWG5
ERN-EYE Webinar - Foveal Hypoplasia: a big diagnostic dilemma
Переглядів 283Рік тому
ERN-EYE Webinar - Foveal Hypoplasia: a big diagnostic dilemma
Best-of ESHG and SOE 2023
Переглядів 30Рік тому
Best-of ESHG and SOE 2023
Meet the working groups leaders - Dr Daniel Böhringer leader of the WG 4 on anterior segment
Переглядів 23Рік тому
Meet the working groups leaders - Dr Daniel Böhringer leader of the WG 4 on anterior segment
ERN-EYE Webinar - Idiopathic Intracranial Hypertension
Переглядів 248Рік тому
ERN-EYE Webinar - Idiopathic Intracranial Hypertension
ERN-EYE webinar (5th June 2023) - Genetic Testing Strategies for Rare Eye Diseases
Переглядів 359Рік тому
ERN-EYE webinar (5th June 2023) - Genetic Testing Strategies for Rare Eye Diseases
REDgistry - Rare Eye Diseases Registry
Переглядів 122Рік тому
REDgistry - Rare Eye Diseases Registry
REDgistry - Registre des maladies rares de l'œil
Переглядів 54Рік тому
REDgistry - Registre des maladies rares de l'œil
Meet the working groups leaders - Pr Katarina Stingl, leader of the TWG8 on Research
Переглядів 72Рік тому
Meet the working groups leaders - Pr Katarina Stingl, leader of the TWG8 on Research

КОМЕНТАРІ

  • @raphael_john_ng
    @raphael_john_ng 27 днів тому

    Hi please I am working on a research relating to this , do you have a repository of dataset that can be used ? Thank you

  • @technohasim00
    @technohasim00 Місяць тому

    How are you doing? I am a regular viewer from your channel. I am just here to tell you that you are creating very amazing content. Good luck to you.

  • @geraldinaalexandra71
    @geraldinaalexandra71 4 місяці тому

    Olá bom dia, Dr preciso de ajuda 🆘 para tratamento do meu filho,sou Angolana e meu filho tem uma lesão cerebral e aqui no meu país não tem tratamento nenhum para essa situação como vocês podem me ajudar 🆘

  • @ukaszlewinski9875
    @ukaszlewinski9875 Рік тому

    Promo-SM

  • @laureweslch4572
    @laureweslch4572 Рік тому

    France

  • @creuzasimionatto1838
    @creuzasimionatto1838 Рік тому

    Thanks for the info. Unfortunately, the third speaker was dificulta to understand, perhaps his microphone was too near his mouth.

  • @laverne5890
    @laverne5890 2 роки тому

    promosm 😠

  • @NikolasPontikos
    @NikolasPontikos 2 роки тому

    @eye2gene like this :)

  • @samuelross892
    @samuelross892 3 роки тому

    😝 Promo-SM!

  • @dubbydub9245
    @dubbydub9245 3 роки тому

    Thank you so much! I had Papilledema, which caused visual field loss, and Pulsatile Tinnitus, both resulting from Intracranial Hypertension. So as rare as blood-clotting may be, I fear I am highly susceptible due to this history. The Adverse Reporting system is full of Papilledema, Pulsatile Tinnitus, and Intracranial Hypertension, either as one of the symptoms after administration, or as part of the history of an adverse event patient. I do not want to be one such patient. I'm not only worried about one of these underlying conditions becoming exacerbated, I'm worried about something even more severe such as a life threatening stroke. And yet I am told the only cause for medical exemption is an allergy to one of the ingredients. However, I feel like my history and the associated risks should qualify me.