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[2018] September 13-15: 18th International Conference on Behcet’s Disease - Rotterdam - Netherlands


On September 13-15, 2018, the International Society on Behcet’s Disease organizes its 18th international conference in Rotterdam (The Netherlands) under the chairmanship of Dr. Jan van Laar. The event is organized in a biannual basis.

[2017] September 13-17: 26th EADV Congress - Geneva - Switzerland


Sessions on hidradenitis suppurativa: September 13, 2017 13:30-17:30 (The young generation presents its research); September 14, 2017, 13:15-16:30 (New insites into pathophysiology)

More details on their website.

[2017] June 15-17: EADV Fostering Resident course 2017 - Bullous Disease - Groningen - Netherlands


The European Academy of Dermatology and Venereology organises an EADV Fostering Resident courses for dermatology and venereology residents on June 15-17 in Groningen (Netherlands). The main topic is ’Bullous Diseases’.

Free registration

This EADV Fostering Training Course used as blue print the developed and highly appreciated ‘Blister course’, that runs annually since 2000 in Groningen for Dutch dermatologists and pathologists. Moreover, the faculty of the Center for Blistering Diseases are the authors of the forthcoming Study Guide Autoimmune Blistering Diseases, which will be handed to the participants as main learning material. The participants will apply the knowledge in the practical histopathology workshop using multiple digital sections of bullous diseases. A step-by-step learning is provided from the clinical and laboratory diagnosis to therapy.

Programme:

[2017] May 15: First ERN-Skin Course - Helsinki - Finland


ERN-Skin will organize its first course on " How
to use new genetic methods in clinical diagnostics of rare skin
diseases". The course will take place in Helsinki (Finland) on May 15.
The registration should be to: Virve.Vahterkoski-Sjoblom@hus.fi by 13.4.2017.

Preliminary programme:

[2017] February 8-10: 6th International Conference of the EHSF e.V - Copenhagen - Denmark


On February 8-10, 2017, the European Hidradenitis Suppurativa Foundation e.V. organizes its 6th international conference in Copenhagen (Denmark) under the chairmanship of Gregor B. Jemec and expects experts and thematically interested physicians and experts from around the world. The event is organized on an annual basis.

[2016] September 22: Rare Skin Disorders Course - Zagreb - Croatia

PNG - 7.8 kb

The meeting is organized by the Department of Dermatology and Venereology of the University Hospital Center Zagreb and the Genodermatoses & Rare Skin Disorders Network with the support of the European Academy of Dermatology and Venereology.
The steering committee is composed of:

  • B. Marinovic, Head of the Dept. of Dermatology and Venereology of the University Hospital Center, Zagreb
  • C. Bodemer, Head of the Department of Dermatology, Necker Enfants Malades Hospital, Institut IMAGINE, Paris, France, Coordinator of the ERN-Skin application - President Genodermatoses & Rare Skin Diseases Network
  • M. El-Hachem, Head of the Department of Dermatology, Ospedale Pediatrico Bambino Gesù, Rome, Italy Co- coordinator of the ERN-Skin application - President-elect of Genodermatoses & Rare Skin Diseases Network
  • J. Bauer, Head of the Department of Dermatology, Paracelsus Medical University Salzburg, Austria - Co- coordinator of the ERN-Skin application - Past-President Genodermatoses & Rare Skin Diseases Network

To learn more, register or apply to an educationnal grant, please click here.

[2015] June 19: GNTS 2015, the Genodermatoses & Rare Skin Disorders Network Training Session 2015 - Iasi - Romania


Organizers

In partnership with the Genodermatoses & Rare Skin Disorders Network, GNTS 2015 is organized under the authority of

  • University of Medicine and Pharmacy "Grigore T. Popa" Iasi,
  • Romanian Society of Human Genetics
  • "P Poni" Institute for Macromolecular Chemistry, Romanian Academy.
  • Apollonia University

Aim

  • increase knowledge on rare genetic skin disease diagnosis and management
  • develop and improve skills to manage different genodermatoses and rare skin disorders
  • encourage health care providers to adopt a multidisciplinary approach
  • highlight key role of patient groups
  • network specialists As such, the course should have a direct impact in health care providers’ practice and will be rewarded with EMC credits.

Topics

Ectodermal Dysplasia, Epidermolyisis Bullosa, Ichtyosis, Neurofibromatosis, Netherthon Syndrome, Nevus Comedonicus, Porphyria, Tuberous Sclerosis,

Organizing Committee

  • Coordinator of GNTS 2015: Prof dr Anca Chiriac, Department of Dermatology-Physiology, Apollonia University, Iasi, Romania
  • Coordinator of the Scientific Programme: Prof. dr Eusebiu Vlad Gorduza, Medical Genetics Department, University of Medicine and Pharmacy "Grigore T. Popa" Iasi
  • Dr Meda Bradeanu, Department of Neonatology, "Elena Doamna" Hospital of Obstetrics Iasi
  • Lect. dr. Lacramioara Butnariu, Medical Genetics Department, University of Medicine and Pharmacy "Grigore T. Popa" Iasi
  • Prof. dr. Liliana Foia, Biochemistry Department, University of Medicine and Pharmacy "Grigore T. Popa" Iasi
  • Dr Mariana Pinteala, "P Poni" Institute for Macromolecular Chemistry, Romanian Academy
  • Prof. dr. Maria Stamatin, Neonatology Department, University of Medicine and Pharmacy "Grigore T. Popa" Iasi
  • Prof.dr Simona Stolnicu, Department of Pathology, University of Medicine and Pharmacy of Tg Mures
  • Lect. dr. Laura Trandafir, Pediatrics Department, University of Medicine and Pharmacy "Grigore T. Popa" Iasi

To read a full presentation of the event, please click here.
If you wish to learn more or to register, please send us an email.

[2014] November 6-7: Towards a network of excellence for rare skin disorders in the North Africa and the wider Middle-East area - Beirut - Lebanon


The Organizing Committee

The workshop is co-organized by:

  • Saint George Hospital University Medical Center, Beirut, Lebanon
  • Unité de Génétique Médicale, Université Saint-Joseph,Beirut, Lebanon
  • MAGEC, the French Expertise Centre on Rare Skin of the Hôpital Necker-Enfants Malades
  • the Genodermatoses Network thanks to the support of the EADV.

The Scientific Committee

  • Hala Abi-Rached
  • Christine Bodemer
  • André Mégarbané
  • Pierre Vabres

Objectives

  • bring together clinicians and scientists from Europe, North Africa and the wider Middle East area
  • increase skills on rare skin diseases management
  • develop collaborative projects to improve health care and social support for patients and families in each country with a special focus on the Lebanon’s situation

This high-level scientific meeting included plenary lectures (diagnosis and management of main genodermatoses in neonates, updates in skin mosaicism, long term practical management) as well as interactive clinical cases and networking between experts.

Two networking meetings will allow the partners of the Genodermatoses Network to discuss collaborative projects to improve health care and social support for patients.

Speakers

  • Juliette Mazereeuw-Hautier - Hôpital Larrey, Toulouse, France
  • Christine Bodemer - Hôpital Necker Enfants Malades, Paris, France
  • Arti Nanda - As’ad Al-Hamad Dermatology Center, Kuweit city, Kuweit
  • Smail Hadj-Rabia - Hôpital Necker Enfants Malades, Paris, France
  • Daniel Levy - Fondation Maladies Rares, Paris, France
  • Antonio Torello - Hospital Infantil del Niño Jesús, Madrid, Spain
  • Pierre Vabres - Hôpital du Bocage, Dijon, France
  • Rudolf Happle - Philipps-Universität Marburg, Marburg, Germany
  • Hala Abi-Rached - Saint Georges Hospital University Medical Centre, Beirut, Lebanon
  • Mazen Kurban - American University of Beirut, Beirut, Lebanon
  • André Mégarbané - Université Saint Joseph, Beirut, Lebanon
  • Maya El-Hachem - Ospedale Pediatrico Bambino Gesù, Roma, Italia
  • Meriem Jones - Hôpital Charles Nicolle, Tunis, Tunisia

Click to read the programme

Together Against Genodermatoses Training and Networking Session was organized with the support of:

  • FRT - Genodermatoses & Rare Skin Disorders Network is the European and international network on rare skin diseases for patients and professionnals where partners work together to improve health care and social support for patients with severe and rare genetic skin diseases, and to promote a patient based approach.
  • EADV - European Academy of Dermatology and Venereology’s mission is to advance excellence in clinical care, research, education and training in the field of dermatology and Venereology and to act as the advocate and educator of patients
  • Order of Malta
  • AUF - Agence Universitaire de la Francophonie

[2014] October 30-31: Highlight on cutis laxa, ectodermal dysplasia, incontinentia pigmenti and specific common problems (pain, pruritus, nutrition) - Paris - France


The Scientific Committee

  • Christine Bodemer, Head
  • Smail Hadj-Rabia
  • Johann Bauer

The Organizing Committee

The workshop is organized by:

  • MAGEC, the French Expertise Centre on Rare Skin of the Hôpital Necker-Enfants Malades
  • the Genodermatoses Network thanks to the support of the EADV.

Aim

  • increase knowledge on ectodermal dysplasia, incontinentia pigmenti, cutis laxa, ichthyosis and palmoplantar keratoderma detection, diagnosis and management
  • develop and improve skills to manage common problems in different genodermatoses
  • encourage health care providers to adopt a multidisciplinary approach
  • update on last findings including the ectodermal dysplasia protein substitutive treatment, a model for other genodermatoses.
  • highlight key role of patient groups
  • network specialists As such, the course should have a direct impact in a doctor’s practice.

Programme Overview

MAGEC-GNTS 2014 will involve 14 sequential lectures of 30 minutes each from European and international experts, leaders in their field.
The program, intended to health care providers, has 2 specificities:

  • Highlight on cutis laxa and ectodermal and keratodermal disorders
  • Focus on crosscutting symptoms

MAGEC-GNTS was granted 6 European CME credits.

Speakers

  • Christine Bodemer - Hôpital Necker Enfants Malades, Paris, France
  • Bert Callewaert - Ghent University Hospital, Gent, Belgium
  • Frédéric Caux - Hôpital Avicenne, Bobigny, France
  • Isabelle Desguerre - Hôpital Necker Enfants Malades, Paris, France
  • Khaled Ezzedine - Groupe Hospitalier Pellegrin, Bordeaux, France
  • Smail Hadj-Rabia - Hôpital Necker Enfants Malades, Paris, France
  • Angela Hernandez - Hospital Infantil del Niño Jesús, Madrid, Spain
  • Stéphanie Leclerc-Mercier - Hôpital Necker Enfants Malades, Paris, France
  • Kenneth Huttner - Edimer Pharmaceuticals
  • Matthias Schmuth - Innsbruck Medical University, Innsbruck, Austria
  • Pascal Sommer - Institut de Biologie et Chimie des Protéines, Lyon, France
  • Sonja Ständer - University Hospital Münster, Germany
  • Antonio Torello - Hospital Infantil del Niño Jesús, Madrid, Spain

Sponsors
MAGEC-GNTS is organized with the support of:

  • FRT - Genodermatoses Network is the European and international network on rare skin diseases for patients and professionnals where partners work together to improve health care and social support for patients with severe and rare genetic skin diseases, and to promote a patient based approach.
  • EADV - European Academy of Dermatology and Venereology’s mission is to advance excellence in clinical care, research, education and training in the field of dermatology and Venereology and to act as the advocate and educator of patients

Sponsorship opportunities

MAGEC-GNTS 2014 will get together leader teams in the field of rare skin diseases as well as health care providers willing to develop their skills in that field.

MAGEC-GNTS 2014 is an event co-organized by the Genodermatoses Network, the European and international network on rare skin diseases for patients and professionnals where partners work together to improve health care and social support for patients with severe and rare genetic skin diseases, and to promote a patient based approach.
This network gets together more than 70 medical, paramedical and research teams from European, Mediterranean and Middle-Eastern countries.

Pharmaceutical companies are key partners to improve health care for patients suffering from rare skin diseases.

Click here to read the program

If you wish to register, please send us an email.

[2013] Genodermatoses Symposium, Lisbon, Portugal, 31 May-June 1, 2013

The Hospital CUF Descobertas, the Centro Hospitalar Lisboa Norte, Debra Portugal and Aspori, the Portuguese Association for Ichthyosis Patients organised a Genodermatoses Symposium in Lisbon on May 31 - June 1 2013.
Learn more

[2012] EB Course - Great Ormond Street Hospital London - 10&11 September 2012

An EB course is organized on 10th and 11th September 2012 at Great Ormond Street Hospital, London.

Programme

  • Monday 10th September:

A general day with a practical approach for those working with patients (adult and children) with all types of EB, or those with an interest in EB. The aim is to give an overview of the different types of epidermolysis bullosa, (EB) multi disciplinary management and expected outcomes.
This study day will be delivered by the EB Specialist Nurses at Great Ormond Street Hospital, and colleagues from St Thomas’s Hospital.

  • Tuesday 11th September:

The advanced course content will include talks on research, ophthalmology, and psychology, the gut, and cancer and pain management. The aim is to a greater understanding of the complexities and complications of EB and their management
This study day will be delivered by the EB Specialist Nurses at Great Ormond Street Hospital.

[2012] First Workshop on Ichthyosis / 22 June 2012 / Madrid - Spain

On June 22, 2012 the first Spanish workshop on ichthyosis will be held at the Niño Jesús Children’s Hospital, Madrid. The program will cover different areas of the disease, including clinical, research and social aspects. The workshop will be in Spanish. Registration is free.
Please click here to download the program of this event.

[2011] 22 November - NKUA

"Genodermatoses I": Epidermolysis Bullosa and Palmoplantar Keratoderma
Educational program of “A.Sygros” Hospital, Deparment of Dermatology University of Athens.

[2011] 17 November - OPBG / IDI-IRCCS

Continuity of care to patients affected by genodermatoses - Hospital network-territory

The goal of this course has been to define the best available care strategy for patient daily life, taking into account health care, nursing care and social care. All actors involved in patient care participated to this course: patients, patient associations, scientific societies, specialists, nurses and psychologists from different countries and the Italian Health Authorities. The participants were Italian and foreigners coming from Bulgaria, Holland, Romania, Greece, Slovenia, Austria, Hungary, UK, Spain. The number of the participants was 52: 22 MDs, 22 nurses, 2 dental hygienists, 2 delegated from patient associations, 2 psychologists, 1 biologist, 1 physiotherapist. For this event we obtained the patronage of the Ministry of Health and the following scientific societies: S.I.Der.P. (Italian Society for Pediatric Dermatology), S.I.P. (Italian Society of Pediatrics), A.D.O.I. (Italian Association of Hospital Dermatologists), D.D.I. (Women Dermatologists in Italy), ACP (Cultural Association of Pediatricians), FIMP (Italian Federation of Pediatricians), SIDeMaST (Italian Society of Medical, Surgical and Aesthetic Dermatology and of Sexually Transmitted Diseases). This training course received 7 national CME credits for MDs, nurses and psychologists.

[2011] 16 November - OPBG / IDI-IRCCS

International theoretical and practical course - Nursing of patients with EB

This course was aimed to define the best available strategy for nursing care of patients affected with EB, taking in consideration all the age groups of patients. The teaching team was composed from personnel of OPBG and the EB team of Great Ormond Street Hospital (UK). The course received 3.5 national CME credits for physicians and nurses. The participant number was 26: 16 nurses, 2 oral hygienists, 2 patient association representatives, 5 MDs, 1 psychologist. Trainees were from different countries: Italy, UK, Bulgaria, Holland, Romania, Greece, Slovenia, Austria, Hungary, Spain.

[2011] 12-13 November - CING-CY

Together Against Genodermatoses

[2011] 17 September - IDI-IRCCS

Xeroderma pigmentoso (XP) e tricotiodistrofia (TTD): dalla diagnosi alla gestione del paziente (Xeroderma pigmentosum and trichothiodystrophy: from diagnosis to patient care)

The speakers were from IDI-IRCCS, ISD, from the National Research Center (CNR) in Pavia and the French patient XP association (Enfants de la lune). The course has addressed the clinical and diagnostic aspects of XP and TTD, the dermatological management of patients, and the role of the patient association in the support to the families and their education. Some patients participated to this meeting and a first contact was established with the French patient association with the aim to create an Italian patient association for XP. The participants were 14. They were MD, biologists, chemists. This training course received national 4 CME credits for MD and chemists and 3 CME credits for biologists.

[2011] 11 June - ISD

Ectodermal dysplasia-syndactyly syndrome: clinical and molecular genetic features

[2011] January - ISD

Course of Genodermatoses and Pediatric Dermatology for Students of the Faculty of Medicine and Surgery-University of Milan by Dr Tadini and Prof Gelmetti.

[2010] 21 October - OPBG

Course on the multidisciplinary approach of neurofibromatosis (NF)

The aim of this course has been to improve the knowledge on this genodermatosis and on its multidisciplinary care. The course was addressed to MDs of different specialties. The topics were: cutaneous manifestations of NF and differential diagnosis of cafè au lait spots; extracutaneous manifestations, particularly neurological, skeletal, and ophthalmic ones. The genetic aspects, molecular diagnosis and the surgical therapy of NF have been also illustrated. The number of the participants was: 20, all of them MDs. The training course received 2 national CME credits for MDs.

[2010] 18-19 June - IDI-IRCCS

Approccio multidisciplinare delle ittiosi / Multidisciplinary approach to ichthyoses

The speakers were from IDI-IRCCS, OPBG, ISD and from the Dermatology Dept. of Munster, Germany. The course has addressed the multidisciplinary approach to the diagnosis and care of inherited ichthyosis patients, with the following topics: New international classification of ichthyosis, Clinical aspects of syndromic and non syndromic ichthyosis, Ichthyosis in metabolic diseases, Netherton syndrome, Trichothiodystrophy, Diagnostic approach to ichthyosis, Molecular diagnosis of ichthyosis, Treatment of ichthyosis, Palmo-plantar keratoderma, Clinical cases. The participants were 22. They were medical doctors (MDs), biologists, chemists and technicians. This training course received national 6 CME credits for MDs, biologists, chemists and 8 CME credits for laboratory technicians.

[2010] 5-6 March - OPBG

Approccio multidisciplinare delle epidermolisi bollose ereditarie (Multidisciplinary approach to inherited epidermolysis bullosa) held on March 5-6, 2010 at the OPBG.

The course has addressed the multidisciplinary approach to the diagnosis and care of inherited EB patients, with the following topics: International disease classification, Epidemiology and national disease registry in Italy, Clinical aspects from the neonatal period to adulthood, Diagnostic approach including antigen mapping, ultrastructural analyses and mutation search, Genetic counseling, EB care in the neonatal age period, The role of the dentist, plastic surgeon, digestive surgeon, anesthetist, pediatrician in EB care, The role of the nurse, dietician and psychologist in the management of EB patients, Quality of life in EB. This course had also a practical session on the different diagnosis technique and nursing.This training course received national 10 national CME credits for MDs. The participants were 14, all MDs.

[2010] January - ISD

Course of Genodermatoses and Pediatric Dermatology for Students of the Faculty of Medicine and Surgery-University of Milan by Dr Tadini and Prof Gelmetti

[2009] 6 October - CRNF

Workshop on Neurofibromatosis

[2009] January - ISD

Course of Genodermatoses and Pediatric Dermatology for Students of the Faculty of Medicine and Surgery-University of Milan by Dr Tadini and Prof Gelmetti

[2009] Spain - 1st National Epidermolysis Bullosa Day
Hospital Niño Jesús, Madrid, 14th of January


From Evanina Makow, Manager, Debra Espana

The first national Epidermolysis bullosa day was organised by the Hospital Niño Jesus (Madrid) together with the governmental research entity CIEMAT and the patient organisation DEBRA Spain.

The mission was to organise a multi-disciplinary EB service for the first time in Spain. Since the clinical manifestations of EB are very diverse since a number of different forms of the condition exist with varying phenotypes and prognosis, 8 patients were selected on the basis of their genetic diagnosis, all of which having distrophic recessive EB and exactly the same mutation.

Currently there is no cure for any of the forms of EB. However, effective symptomatic and preventative treatment is available, and is best managed, shown by countries such as the United Kingdom, by dedicated, multi-disciplinary specialised EB centres.

The objective was three-fold:

  • for the multi-disciplinary team to be able to study the different phenotypes within a same genotype and to offer patients the recommendations on the different management options, and, where appropriate, likely prognosis.
  • to allow enough time between all members of the multidisciplinary team and patients, to discuss specific problems or concerns and so that patients could have sufficient time and support to make informed decisions about their treatment.
  • to set the guidelines for national standards of practice for multi-disciplinary care of EB as well as a national network of EB professionals

The day was organised in the following way, there were 4 groups of professionals, divided, on the one hand, in the dermatology unit into the groups:

  • dermatologists and nurses
  • surgeons
  • paediatricians, nutritionists and haematologists
  • researchers

and in a separate department, the patients would be seen by a dentist and an ophthalmologist. There were in total, in the morning session, about 30 professionals.

Each group had a lead clinician who was responsible for coordinating the activities of his/her team, ensuring good communication between team members and compiling the conclusions of his/her team on each patient.

In addition, 8 of the dermatologists were assigned a given patient and were asked to prepare, for the afternoon clinical session, a presentation about the different recommendations from the different professionals for that given patient.

From 09:30 to 11:30 4 patients were seen in four separate boxes, and the four groups of professionals rotated between the boxes in order to avoid the patient having to move (they are in each box without clothes nor bandages).

Simultaneously, the other 4 patients were being seen by the ophthalmologist and dentist.

At 11:30 there was a half an hour break for the patients to get dressed and for the other four to get undressed.

From 12:30 to 14:30, the group of 4 patients switched around, allowing all patients to see all professionals.

In each box there was a volunteer (clinician or researcher) who took note of all recommendations on a previously made template with the different disciplines (recommendations from nurses, dermatologists, surgeons, etc). These volunteers did not move from their given box, to avoid doctors having to loose time writing things down.

At 15:00 all professionals as well as patients convened for a light lunch, where patients could talk in a more relaxed atmosphere with their doctors.

At 16:30, an afternoon clinical day, only open to professionals (those of which attended the morning session as well as other professionals interested in assisting) was celebrated in the hospital.

A total of 80 professionals attended the afternoon session which involved seven 20 minute presentations on issues and complications concerning EB, such as diagnostic, treatment, surgery, etc, and then the 8 leading dermatologists presented each of the patients separately, with their different characteristics and the different comments from the professionals, leading to great discussion.

At the end of the session, an internet Spanish network for professionals working with EB was set up and has been used ever since to consult questions, treatments, etc.

All patients were given an evaluation form at the end of the day and were later sent to their home a report with all of the recommendations. From the evaluation form, patients communicated their satisfaction with having had a multi-disciplinary attention as well as having the necessary time dedicated to their questions and doubts.

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