Next webinars

Our next ERN-Skin webinar series are starting on September 2025. They are open for healthcare professionals and patient representatives. Each month you will have access to a webinar until May 2026.

More details and registration of our upcoming webinars will be available soon.

16th December 2025

Postponed to January 13th, 2026 from 1:00 – 2:00 pm CET

Our next webinar organized by the thematic group on Mendelian connective tissue disorders (MCTD) will be structured in 2 parts:

Part 1: An Integrative Machine Learning Approach to Classify Cutis Laxa patients, supported by electron microscopy

Presented by:

  • Prof. dr. Bert Callewaert, Pediatrician, clinical geneticist at Department of biomolecular medicine, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium.
  • Dr. Aude Beyens, clinical geneticist at Department of biomolecular medicine, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium.

Part 2: Myhre syndrome: clinical presentation, genotype-phenotype correlations and clinical severity score

Presented by:

  • Dr. Eva Van Belleghem, Department of biomolecular medicine, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium.

Chaired by Dr. Serwet Demirdas (clinical geneticist at the Erasmus Medical Center in Rotterdam, The Netherlands)

Organized by the thematic group on Mendelian connective tissue disorders (MCTD)

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27th January 2026 from 1:00 – 2:00 pm CET

What is new in EB from the EB Research conference in Brazil (January 20–22, 2026).

Presented by:

  • Angelique Sauvestre – Debra patients’ representatives’ perspective
  • Prof. dr. Cristina Has (University Hospital Freiburg – Department of Dermatology and Venereology, Freiburg, Germany) – physicians and researchers’ perspective

Chaired by Prof. dr. Christine Bodemer (Hôpital Necker-Enfants Malades – Department of Dermatology and Venereology, Paris, France)

Organised by thematic group on Inherited Epidermolysis Bullosa and skin fragility syndromes – Darier disease – Hailey-Hailey disease (EB)

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24th February 2026 from 1:00 – 2:00 pm CET

Organized by the thematic group on Ectodermal Dysplasias including Incontinentia Pigmenti and p63-associated disorders (ED)

31st March 2026 from 1:00 – 2:00 pm CET

Organised by thematic group on Cutaneous Mosaic Disorders Naevi & Naevoid skin disorders, complex vascular malformations and vascular tumors (MOSAIC)

28th April 2026 from 1:00 – 2:00 pm CET

Organized by the thematic group on Cutaneous Diseases related to DNA repair Disorders and photosensitivity (DNA+)

26th May 2026 from 1:00 – 2:00 pm CET

Organised by thematic group on Ichthyosis and Palmoplantar Keratoderma (IPPK)

Previous webinars

28th January 2025, 1:00 pm – 2:00 pm CET

EB management: therapeutic perspectives: where we are

  • Speaker: Prof. Dr. Cristina Has from University Medical Center Freiburg · Department of Dermatology and Venereology. Freiburg, Germany.
  • Chaired by Prof. Dr. Christine Bodemer from Hôpital Necker-Enfants Malades, Paris, France.

Organised by thematic group on Inherited Epidermolysis Bullosa and skin fragility syndromes – Darier disease – Hailey-Hailey disease (EB)

25th February 2025, 1:00 pm – 2:00 pm CET

Animal models for AIBDs of the dermoepidermal junction

  • Speaker: Prof. Dr. Enno Schmidt, MD Lübeck Institute of Experimental Dermatology (LIED), University of Lübeck, Lübeck, Germany
  • Chaired by Prof. Dr. med. Matthias Goebeler, Director of the Clinic and Polyclinic for Dermatology, Venereology and Allergology, University Hospital Würzburg

Organised by thematic group on AutoImmune Bullous Diseases (AIBD)

25th March 2025, 1:00 pm – 2:00 pm CET

Pathogenic mechanisms of EDA deficiency

  • Speakers:
    • Dr. Kang Yu, from Shanghai Ninth People’s Hospital. Shanghai Jiao Tong University School of Medicine. Shanghai, China.
    • Prof. Yiqun Wu, from Shanghai Ninth People’s Hospital. Shanghai Jiao Tong University School of Medicine. Shanghai, China.
  • Chaired by Prof. Holm Schneider from University Hospital Erlangen. Children’s and Adolescent Clinic Loschgestr. Erlangen, Germany.

ERN-Skin thematic group: Ectodermal Dysplasias including Incontinentia Pigmenti and p63-associated disorders (ED)

29th April 2025, 1:00 pm – 2:00 pm CET

Heritability of mosaic diseases of the skin: X-linked diseases, AD-non lethal mosaics, gonadal mosaicism and AR mosaicism

  • Speaker: Dr. Antonio Torrelo, Head of the Department of Dermatology in the Children’s Hospital del Niño Jesús in Madrid, Spain.
  • Chaired by Dr. Andrea Diociaiuti. Dipartimento Pediatrico Universitario Ospedaliero. IRCCS Ospedale Pediatrico Bambino Gesù – SEDE GIANICOLO, Italy.

ERN-Skin thematic group: Cutaneous Mosaic Disorders Naevi & Naevoid skin disorders, complex vascular malformations and vascular tumors (MOSAIC)

27th May 2025, 1:00 pm – 2:00 pm CET

Genomic mutation landscape of skin cancers from xeroderma pigmentosum

  • Speaker: Sergey Nikolaev, researcher at Gustave Roussy Cancer Center, Villejuif, France.
  • Chaired by Dr. Fanny Morice-Picard, CHU de Bordeaux, Centre de Référence pour les Maladies Rares de la Peau (CRMRP), Bordeaux, France.

ERN-Skin thematic group: Cutaneous Diseases related to DNA repair Disorders and photosensitivity (DNA+)

24th June 2025, 1:00 pm – 2:00 pm CET

Introduction to the new classification of EDD (epidermal differentiation disorders)

Different speakers will participate:

  • Introduction: Angela Hernandez-Martin and Juliette Mazereeuw-Hautier
  • Syndromic EDD: Mathias Schmuth
  • Non syndromic EDD: Antoni Gostynski
  • Palmo plantar EDD: Edel O’Toole
  • Conclusions: Angela Hernandez-Martin and Juliette Mazereeuw-Hautier

Organised by ERN-Skin thematic group on Ichthyosis and Palmoplantar Keratoderma (IPPK)

27th October 2025 from 5:00 – 6:00 pm CET

Exceptionally this webinar will take place on Monday from 5:00 pm to 6:00 pm CET

Scientific Seminar on Methotrexate or Dupilumab as maintenance therapy for patients with Bullous pemphigoid which one for whom?

Co-organized by ERN-Skin AIBD thematic group and patient association IPPF

25th November 2025 from 1:30 – 2:30 pm CET

POSTPONED: It will take place from 2:00 – 3:00 pm CET

Invisible Scars: Psychological and Health-Related Quality of Life Sequelae in Severe Cutaneous Adverse Reactions (SCARs), with a Focus on SJS/TEN.

  • Presented by Roni P. Dodiuk-Gad
    • Clinical Associate Professor & Head, Dermatology Program, Bruce Rappaport Faculty of Medicine, Technion – Institute of Technology, Israel.
    • Head, Inflammatory and Autoimmune Skin Diseases Unit, Dermatology Department, Emek Medical Center, Israel.
    • Assistant Professor – Status Only, Division of Dermatology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
  • Chaired by Prof. Dr. Saskia Oro, from Hôpital Henri-Mondor AP-HP, Paris, France.

Organized by the thematic group on Severe Cutaneous Drug Reactions – Toxic Bullous Diseases (ToxiTEN)

16th January 2024

European Rare Diseases Research Alliance (ERDERA)

ERDERA proposal was submitted under Horizon Europe on 19 Sept. 2023 for funding under the EU Research & Innovation funding programme Horizon Europe as a co-funded partnership between the European Commission, European Member States, and beyond.

  • Presented by Yanis Mimouni and Daria Julkowska, European Joint Programme on Rare Diseases
  • Webinar PDF presentation: Have a look at the PDF presentation, click here
  • Webinar REPLAY: This content is reserved for ERN-Skin members and healthcare professionals.
30th January 2024

EBStatMax

EBStatMax is a clinical trials methodology demonstration project co-funded by the European Joint Programme on Rare Diseases (EJP-RD)

  • Presented by Johann Bauer, University Hospital Salzburg, Austria
27th February 2024, 1:00 pm – 2:00 pm CET

Long-Term Sustained Complete Remission Off Corticosteroid Therapy in Patients with Pemphigus Who Received Rituximab as First-Line Therapy: Results From a Median 7-Year Follow-up Study of the Ritux 3 Trial

  • Presented by Prof. Pascal Joly, from Centre de Référence Maladies Bulleuses Auto-immunes, Clinique dermatologique CHU de Rouen, Rouen France.
  • Chaired by Prof. Branka Marinović, from Zagreb Clinical Hospital Center, Zagreb, Croatia.

Organized by thematic group on AutoImmune Bullous Diseases (AIBD)

27th March 2024, 1:00 pm – 2:00 pm CET

Please note: Exceptionally this webinar takes place on Wednesday instead of Tuesday

Recent findings on: “GNAQ/GNA11 Mosaicism Causes Aberrant Calcium Signaling Susceptible to Targeted Therapeutics.”

  • Presented by Prof. Veronica Kinsler. Professor of Paediatric Dermatology and Dermatogenetics – Great Ormond St Hospital for Children, London, UK.
  • Chaired by Dr. Andrea Diociaiuti. Dipartimento Pediatrico Universitario Ospedaliero. IRCCS Ospedale Pediatrico Bambino Gesù – SEDE GIANICOLO, Italy.

Organized by thematic group on Cutaneous Mosaic Disorders Naevi & Naevoid skin disorders, complex vascular malformations and vascular tumors (MOSAIC)

30th April 2024, 1:00 pm – 2:00 pm CET

Recent paper about the involvement of TFIIH in DNA repair diseases and therapeutic perspectives.

  • Presented by Dr. Arjan Theil from Erasmus University Medical Centre Rotterdam, Rotterdam, Netherlands.
  • Chaired by Dr. Fanny Morice-Picard from CHU de Bordeaux, Centre de Référence pour les Maladies Rares de la Peau (CRMRP), Bordeaux, France.

Organized by thematic group on Cutaneous Diseases related to DNA repair Disorders and photosensitivity (DNA+)

28th May 2024, 1:00 pm – 2:00 pm CET

Thymic dysplasia, autoantibodies to type I IFNs, and viral diseases in women with incontinentia pigmenti.

  • Presented by Dr. Jérémie Rosain, DMU BioPhyGen, AP-HP. Centre-Université Paris Cité laboratoire de Génétique Humaine des Maladies Infectieuses, Institut, Imagine and Centre d’Étude des Déficits Immunitaires (CEDI), Hôpital Necker-Enfants malades, Paris, France.
  • Chaired by Prof. Smail Hadj-rabia, Hôpital Necker-Enfants malades, Paris, France.

Organized by thematic group on Ectodermal Dysplasias including Incontinentia Pigmenti and p63-associated disorders (ED)

26th November 2024, 1:00 pm – 2:00 pm CET

Skin in Manifestations in EDS: what are they and how to manage them

  • Presented by:
    • Prof. Dr. Fransiska Malfait, from Centre for Medical Genetics Ghent, Ghent, Belgium.
    • Prof. Clair A. Francomano, Professor of Medical and Molecular Genetics at Indiana University, Indiana, USA.
  • Chaired by Prof. Dr. Bert Callewaert, from Centre for Medical Genetics Ghent, Ghent, Belgium.

Organized by the thematic group on Mendelian connective tissue disorders (MCTD)

17th December 2024, 1:30 pm – 2:30 pm CET

Severe cutaneous adverse reactions and their mimickers associated with cancer treatments

  • Speaker: Prof. Dr. Chia-Yu Chu, from Department of Dermatology National Taiwan University Hospital, Taiwan.
  • Chaired by Prof. Dr. Saskia Oro, from Hôpital Henri-Mondor AP-HP, Paris, France.

Organized by the thematic group on Severe Cutaneous Drug Reactions – Toxic Bullous Diseases (ToxiTEN)

31st January 2023

“Developmental mosaicism in human skin disorders: a primer for the medical scientist”

  • Presented by Dr. Marco Castori, U.O.C. Genetica Medica IRCCS Ospedale Casa Sollievo della Sofferenza -Poliamb. Giovanni Paolo II, San Giovanni Rotondo
  • Chaired by Dr. Andrea DIOCIAUITI, IRCCS Ospedale Pediatrico Bambino Gesù, Rome, Italy.

Organized by thematic group on Cutaneous Mosaic Disorders – Nevi & Nevoid Skin Disorders and Complex Vascular Malformations and vascular Tumours (MOSAIC).

28th February 2023

“The role of ST18 in the pathogenesis of pemphigus vulgaris”

  • Presented by Dr Eli Sprecher from Tel-Aviv Sourasky Medical Center, Israel.
  • Chaired by Prof. Branka Marinović from Zagreb Clinical Hospital Center, Zagreb, Croatia.

Organized by thematic group on AutoImmune Bullous Diseases (AIBD)

28th March 2023

“A specific study on XP”

  • Presented by Prof. Kevin-Thomas Koschitzki
  • Chaired by Dr. Fanny Morice-Picard from CHU de Bordeaux, Centre de Référence pour les Maladies Rares de la Peau (CRMRP), Bordeaux, France.

Organized by thematic group on DNA repair disorders and photosensitivity (DNA+)

25th April 2023

“Modelling adult stem cells and their niche in health and disease with epithelial organoids”

  • Presented by Dr Kai Kretzschmar from University Hospital Würzburg, Germany.
  • Chaired by Prof. Holm Schneider fromUniversity Hospital Erlangen – Erlangen (DE), Germany.

Organized by thematic group on Ectodermal Dysplasia (ED)

26th September 2023

“Oncogenesis of Cutaneous Squamous Cell Carcinoma in Epidermolysis Bullosa”

  • Presented by Prof. Andrew South, from the Department of Dermatology and Cutaneous Biology, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA.
  • Chaired by Prof. Cristina Has, from University Medical Center Freiburg · Department of Dermatology and Venereology. Freiburg, Germany.

Organized by thematic group on Epidermolysis Bullosa (EB)

31st October 2023

“Ichthyoses as a window into the epidermis and beyond”

  • Presented by Prof. Heiko Traupe, from NIRK Zentrale Klinik und Poliklinik für Hautkrankheiten, Universitäts-Hautklinik Münster, Münster, Germany.
  • Chaired by Prof. Juliette Mazereeuw Hautier, from CHU de Toulouse – Hôpital Larrey, Toulouse, France.

Organized by thematic group ERN-Skin thematic group on Ichthyosis and PalmoPlantar Keratoderma (IPPK)

28th November 2023

“PXE (-like) syndromes”

  • Presented by
    • Prof. Olivier Vanakker from Centre for Medical Genetics Ghent, Gent, Belgium)
    • Prof. Ludovic Martin from Service de dermatologie et vénéréologie, CHU d’Angers, Angers, France.
  • Chaired by Prof. Bert Callewaert from Centre for Medical Genetics Ghent, Gent, Belgium.

Organized by thematic group on Mendelian Connective Tissue Disorders (MCTD)

19th December 2023

“New insight into the phenotype of eosinophils in DRESS syndrome and drug induced maculopapular exanthema”

  • Presented by Dr. Frédéric Dezoteux, from Hôpital Huriez du CHU de Lille, Lille, France.
  • Chaired by Prof. Saskia Oro, from Hôpital Henri-Mondor AP-HP, Paris, France.

Organized by thematic group on Severe Cutaneous Drug Reactions – Toxic Bullous Diseases (ToxiTEN)

25th January 2022

Reduced levels of prostaglandin I2 synthase: a distinctive feature of the cancer-free trichothiodystrophy presented by Donata Orioli

  • Chaired by Dr. Fanny Morice-Picard, from CHU de Bordeaux, Centre de Référence pour les Maladies Rares de la Peau (CRMRP), Bordeaux, France.

Organized by thematic group on Cutaneous diseases related to DNA repair disorders (DNA+)

22nd February 2022

Opposite Sides of a Spectrum: Oral Wound Healing vs Chronic Non-healing Wounds

  • Presented by Maria Morasso, Laboratory of Skin Biology, NIAMS, Bethesda, USA.
  • Chaired by Prof. Smail Hadj-Rabia, Hôpital Necker-Enfants malades, Paris, France.

Organized by thematic group on Ectodermal Dysplasias including Incontinentia Pigmenti and p63-associated disorders (ED)

31st March 2022

“The past, present and future of autoimmune blistering diseases”

  • Presented by Prof. Dedee Murrel, St. George Hospital, UNSW Faculty of Medicine, Sydney, Australia.
  • Chaired by Prof. Branka Marinovic, from Zagreb Clinical Hospital Center, Zagreb, Croatia.

Organized by thematic group on Autoimmune Bullous diseases (AIBD)

26th April 2022

“Therapies for dystrophic EB: how close are we from cure”

  • Speaker Dr. Peter Marinkovich, from Stanford Hospital and Clinics, USA
  • Chaired by
    • Prof. Christine Bodemer, from Hôpital Necker-Enfants Malades, Paris, France.
    • Prof. Cristina Has, from University Medical Center Freiburg · Department of Dermatology and Venereology. Freiburg, Germany.

Organized by thematic group on Inherited Epidermolysis Bullosa and skin fragility syndromes – Darier, Hailey-Hailey (EB)

24th May 2022

“What’s new about the Ichthyoses?”

  • Presnted by Amy Paller, Ann & Robert H. Lurie from Children’s Hospital of Chicago, Northwestern Memorial Hospital, USA
  • Chaired by Prof. Juliette Mazereeuw Hautier, from CHU de Toulouse – Hôpital Larrey, Toulouse, France.

Organized by thematic group on Ichthyosis & Palmoplantar Keratoderma (IPPK)

27th September 2022

“An EJPRD funded patient centered networking meeting: The 6th Cutis Laxa days as an example”

  • Presented by
    • Prof. Bert Callewaert, from Centre for Medical Genetics Ghent, Gent, Belgium.
    • Marie-Claude Boiteux, from Cutis Laxa Internationale.
25th October 2022

“The psychological care of and potential psychotherapeutic interventions for patients with Stevens-Johnson syndrome and toxic epidermal necrolysis – The development of a Quality of Life outcome measure (QoLTEN)”

  • Presented by Paulin O’reilly, from University of Limerick, Limerick, Ireland.
  • Chaired by Saskia Oro, from Hôpital Henri-Mondor AP-HP, Paris, France.

Organized by thematic group on ToxiTEN – Severe cutaneous drug reactions (ToxiTEN)

29th November 2022 – ERN-Skin ALLOCATE group and SPIN joint webinar!

“Dermatomyositis : the dermatologist perspective”

  • Presented by Prof. Paolo AMERIO, Chieti’s Hospital, Italy.
  • Chaired by Vincenzo Bettoli, University of Ferrara, Italy and Francesca Prignano, University of Florence, Italy.

Organized by thematic group on Acquired immunologicaL LOw prevalence and Complex AdulT diseases of thE SKIN (ALLOCATE)

13th December 2022

“The role of ST18 in the pathogenesis of pemphigus vulgaris”

  • Presented by speaker Prof. Eli Sprecher, Tel Aviv Sourasky Medical Center Ichilov, Israël

Organized by thematic group on Autoimmune bullous diseases (AIBD)

29th June 2021

Genetic discoveries in ichthyosis – Keith Choate

  • Chaired by Prof. Juliette Mazereeuw Hautier, from CHU de Toulouse – Hôpital Larrey, Toulouse, France.
6th July 2021

Combined cell and gene therapy for Epidermolysis Bullosa – Michele De Luca

  • Chaired by
    • Prof. Christine Bodemer, from Hôpital Necker-Enfants Malades, Paris, France.
    • Prof. Cristina Has, from University Medical Center Freiburg · Department of Dermatology and Venereology. Freiburg, Germany.
28th September 2021

Nevus pathophysiology, Melanoma risks and therapeutic expectations – Sarah Guégan

  • Chaired by Olivia Boccara, from Hôpital Necker-Enfants Malades, Paris, France.
26th October 2021

Cytokines of the IL-1 family in severe cutaneous adverse drug reactions – Emmanuel Contassot

  • Chaired by Saskia Oro, from Hôpital Henri-Mondor AP-HP, Paris, France.
30th November 2021

Adamantiades-Behcet’s disease – Andreas Altenburg

  • Chaired by Christos Zouboulis from Städtisches Klinikum Dessau, Dessau, Germany
14th December 2021

Pathways to address cutis laxa syndromes

  • Presented by Prof. Bert Callewaert, from Centre for Medical Genetics Ghent, Gent, Belgium.
  • Chaired by Prof. Raoul Engelbert