Latest updates

2023 ERN-Skin Board meeting (6th November – Paris, France) – Event summary and information sheets

Event information

The 2023 ERN-Skin Board meeting took place on November 6th at the Hôpital Necker-Enfants Malades, in Paris France, from 8:00 a.m until 4:00 p.m.

Curious about the program, you can check it here

Board Meeting program overview:

  • 5 plenary sessions: ERN-Skin project from 2023 to 2027, Skin ePAG, SPOT App, Artificial Intelligence, ERRAS Registry.
  • 4 parallel workshops dedicated to each thematic group

Event summary and information sheets

During this year’s board many of our ERN-Skin members were represented. There were 70 participants from 8 Skin ePAGs and 46 HCPs. We were very pleased to see them all!

In the table below, you can find several information sheets which contain the key information about the new ERN-Skin thematic groups organisation, tips on how to keep engaging in the ERN-Skin, 2023-2027 ERN-Skin events, 2023 Monitoring, patient satisfaction survey definition, 2023-2027 grant, tips on how to engage as a chair of a thematic group and the main steps to become an ERN-Skin beneficiary.

*You can access and download each document by clicking on the corresponding button

Information sheets Open or download file
Keep on engaging in the ERN-Skin: A few tips!
2023-2027 ERN-Skin events
2023 Monitoring: A few tips!
Patient satisfaction survey: What is it?
2023-2027 grant: What’s new?
New thematic group organization
How to engage as a chair of a group?
How to become an ERN-Skin beneficiary?
New large group organization

Next meetings

2nd World Congress on Rare Skin Diseases – 12th, 13th, 14th June 2024 – Paris, France

The 2nd World Congress on Rare Skin Diseases will take place in Paris, France on the 12th, 13th, 14th of June 2024.

WCRSD 2024 programme overview:

  • 9 plenary sessions: Advances in biology, Technical and clinical challenges in the NGS era, , Wound healing – fibrogenesis, , Various puzzling cases (with voting system), Rising stars, “Juniors challenge seniors” – interactive cases with international leaders, International registries, where we are?, ERN-Skin & European Reference Networks: overlapping diseases and care, Patient forum
  • 14 parallel workshop “update on”: Epidermolysis bullosa and fragility syndromes, Autoimmune bullous diseases, Complex vascular malformations and tumors, Auto-inflammatory disorders, NF1, Toxiderma, Inherited Connective Tissue disorders, DNA Repair Disorders & photosensitivity, Auto-immune diseases: lupus, vasculitis, Dermatomyoisiis.., Ichthyosis – Palmoplantar keratoderma, Pigmentary disorders, Skin cancers: predisposing factors, Ectodermal Dysplasia and Incontinentia Pigmenti, Patient Education Programmes.

From now on you can download and share the WCRSD 2024 communication material!

Choose the format of the poster or banner and share it around you, on social networks…

Communication kit Download File
WCRSD 2024 Poster (format 16-9)
WCRSD 2024 Save the Date (format A5)
WCRSD 2024 Banner (format 1920×450)
WCRSD 2024 Banner (format 1920×825)
WCRSD 2024 POSTER (format A3 – print)
WCRSD 2024 Poster (format A4)
WCRSD 2024 Mail Signature (format 450x190px)

Past meetings

Scientific Day on Cutaneous Mosaicism, 12th of June 2023, Rome, Italy

The ERN-Skin group Mosaicism – Nevi and Nevoid Skin Disorders will organize a meeting on cutaneous mosaicism, on the 12th of June, in Rome, Italy. It will focus on the establishment of practical recommendations for the clinical approach to mosaicism in the skin and mosaic conditions of major impact in regular practice of pediatric dermatology.

This Scientific Day will take place at the Auditorium San Paolo Ospedale Bambino Gesù Children’s Hospital

  • Address: Viale Ferdinando Baldelli, 38.
  • Programme: Click here to see the event programme

You can follow the meeting online!

PEP & Scientific Days, on 2Oth & 21st of April 2023

Welcome to our Patient Education Program and Scientific Days!

On the 20th and 21st of April we will welcome you in the Hôpital Necker-Enfants Malades, more specifically in the amphitheater Robert Debré which is located in the building Robert Debré.

The event will take place in this location both days. Please see the map

– Address: Hôpital Necker-Enfants Malades: 149 Rue de Sèvres, 75015 Paris

– Restaurant address: O’Bistrot d’Or, 8 Av. du Maine, 75015 Paris

 

Click here to see the event programme

To complete the PEP Day preparation, you can always give your input answering our short PEP Survey

23rd-24th March, 2023 – ERN-Skin Workshop – “Epidermolysis bullosa: from genes to translation into therapies”

The workshop will deliver expert knowledge on the following aspects of EB: clinical and genetic basis, wound and interdisciplinary management, how to design and conduct clinical trials, gene therapy, and models used in translational research.

You can find the programme here

More information here

ERN-Skin Workshop on Autoimmune bullous diseases and Severe cutaneous drug reactions in Zagreb, 15 and 16 February, 2023!

For more information about the programme click here

June 7-9, 2022 – World Congress on Rare Skin Diseases – Welcome in Paris!

The ERN-Skin and the René Touraine Foundation are organizing the 1st World Congress on Rare Skin Diseases. We will bring together the medical and paramedical teams, scientists, patient representatives, policy makers, as well as industrial stakeholders. Our common goal is to improve patient care, develop collaboration and increase research! We are counting on you to join and share this new adventure!

March 10, 2022 – ERN-Skin scientific day – online meeting

From 9am to 2pm

  • Part 1: bibliography studies (more details here)
  • Part 2: transversal topics with a focus on recent scientific progress (basic research domain or new technology)

Have a look at the programme…

ERN-Skin Board Meeting – January 14, 2022 – Virtual

It was the last board meeting of the first phase (2017-2022)! A time to review these past 5 years and welcome our 8 new ERN partners, to discuss the future of the ERN-Skin and prepare the ERN-Skin phase 2 (2022-2027).

ERN-Skin Scientific Day – February 19, 2021 – Virtual

The ERN-Skin organised its first ERN-Skin Scientific Day! It was a one-day meeting on transversal & research subjects of interest for rare skin diseases. Transversal subjects, methodology topics for RD clinical trials and clinical cases were presented and discussed by the ERN-Skin thematic groups and invited experts.

ERN-Skin Board meeting 2020 – October 2nd 2020 – Virtual

Due to the Covid-19 pandemic and an earthquake in Croatia, the University Hospital Centre Zagreb was sadly not able to host this event this year. Despite this very special context, we adapted and all together managed to have great meetings. Thank you very much, it was a real pleasure to see so many of you online! This meeting was an opportunity to share information, exchange tools, clarify processes and integrate new skills through  thematic and general  sessions.

ERN-Skin meeting 2019 – Ghent, December 16th 2019

The 3rd edition of the ERN-Skin live training was held in Ghent, Belgium on the 16th of December 2019. The course accredited by UEMS European CME credits focused on: Mendelian connective tissue disorders, Cutaneous diseases related to DNA repair disorders, Hidradenitis suppurativa, Cutaneous mosaic disorders, naevi and nevoid skin disorders, complex vascular malformations. ePAG Skin addressed patient needs and the importance of patient-centered care.

ERN Skin Board Meeting 2019 – Paris, October 1st/2nd 2019

The 2019 ERN-Skin Board Meeting was held in Paris, France on the 1st and 2nd of October.
This meeting was an opportunity to share information, exchange tools, clarify processes and integrate new skills through thematic, general and training sessions. Thanks to the great involvement of ERN-Skin members, we are always improving patient care.