Date: 23 November 2018
Place: Bambino Gesù Hospital, Rome
Organizers: Department of Paediatric Dermatology, Ospedale Pediatrico Bambino Gesù, with the support of the ERN-SKIN training group and FRT-Fondation René Touraine.
Programme: The 2018 training will focus on 4 out of the 8 sub-thematic groups of the ERN-Skin:

  • Autoimmune bullous diseases and severe cutaneous drug reactions
  • Epidermolysis Bullosa
  • Ichthyosis & Palmoplantar Keratoderma
  • Ectodermal Dysplasia – Incontinentia Pigmenti – Unclassified genetic skin disorders

Registration: please fill the form in the “Registration” tab.

The training will focus on 4 of the eight sub-thematic groups :

  • Autoimmune bullous diseases and severe cutaneous drug reactions
  • Epidermolysis Bullosa
  • Ichthyosis & Palmoplantar Keratoderma
  • Ectodermal Dysplasias including Incontinentia Pigmenti and p63-associated disorders

Each 90-minute session will be divided into three 30-minute parts:

  1. Presentation of clinical cases by young medical professionals
  2. Discussion and comments by the group chairs
  3. Update on latest findings and treatments

Click on the title of each session to have the details of the presentations.

Downloadable version

09h00 – 10h30 Autoimmune Bullous Diseases and Severe Cutaneous Drug Reactions

Co-chairs: Branka Marinovic, Pascal Joly

9h00-9h30 : Clinical cases

9h00 – Paradoxical exacerbation of Bullous Pemphigoid following Rituximab treatment
Roberto Maglie

9h05 – Paraneoplastic pemphigus in a girl with post-transplantation lymphoproliferative disorder
Marieke Bolling

9h10 – EBA in 4-year-old girl
Ivana Martinac

9h15 – Diagnostic Conundrums in Bullous Diseases
Vivien Hébert

9h20 – IgA pemphigus associated with ulcerative colitis and review of the literature
Maria Polina Konstantinou

9h25 – Severe drug induced reactions Epidermal necrolysis can be non-toxic
Sophie Lalevée

9h30 – Discussion and comments

Branka Marinovic, Pascal Joly

10h00 – Update: what’s new in the treatment of AIBD?

Saskia Oro

10h30 – 12h00 Epidermolysis Bullosa

Co-chairs: Johann Bauer, Marcel Jonkman

10h30-11h00 : Clinical cases

10h30 – Facing the challenges of managing Laryngo-onchyo-cutaneous syndrome
Cassandra McDonald

10h35 – Mild clinical phenotype in infants unravels EB genotype
Irina Condrat

10h40 – Recessive Dystrophic EB inversa: marked mucosal phenotype with limited cutaneous involvement
Sorcha O’Sullivan

10h45 – Cardiomyopathy in epidermolysis bullosa simplex patients with KLHL24 mutations: an intriguing assocition
Vamsi Yenamandra

10h50 – Epidermolysis Bullosa and anaemia: a complex therapeutic challenge
Lilia Bekel

10h55 – JEB gen sev – unexpected natural histories
Christine Prodinger

11h00 – Discussion and comments

Johann Bauer, Marcel Jonkman

11h30 – Update on EB types and therapies

Christina Has

12h00-13h00 : Lunch

13h00 – 14h30 Ichthyosis & Palmoplantar Keratoderma

Co-chairs: May El Hachem, Kathrin Giehl

13h00-13h30 : Clinical cases

13h00 – Neonatal management
Charlène Denos

13h05 – Use of tazarotene
Luana Niculescu

13h10 – Itch in ichthyoses
Ifigenia Spanoudi

13h15 – Update on Netherton syndrome
Nathalia Bellon

13h20 – Specific treatment of unusual phenotypes
Leonie Frommherz

13h25 – Treatment of Palmoplantar Keratoderma
Bjorn Thomas

13h30 – Discussion and comments

Kathrin Giehl

14h00 – Management of congenital ichthyosis in 2018

Juliette Mazereeuw-Hautier

14h30 – 16h00 Ectodermal Dysplasias including Incontinentia Pigmenti and p63-associated disorders

Co-chairs: Christine Bodemer, Angus Clarke

14h30-15h00 : Clinical cases

14h30 – A woman with severe autosomal-dominant hypohidrotic ectodermal dysplasia
Monika Ettinger

14h35 – Ectodermal dysplasia with extreme palmoplantar hyperkeratosis in a young man
Julia Hiernickel

14h40 – Management of tooth abnormalities in a patient with X-linked hypohidrotic ectodermal dysplasia
Ajit Tanday

14h45 – Dermatological findings in patients with p63 deficiency
Alexia Maillard

14h50 – Sweating ability of patients with EEC and AEC syndrome
Paul Ferstl

14h55 – Ocular care in patients with incontinentia pigmenti
Sarah Michel

15h00 – Discussion and comments

Holm Schneider

15h30 – Update on ED types and therapies

Smail Hadj-Rabia

16h00-16h30 : Discussion and conclusions of the training

Christine Bodemer, Maya El-Hachem

Specialists and paramedics from European Union Member States with no health care provider within the ERN-Skin or with insufficient numbers of patients, or lacking technology or expertise to provide highly specialized services for patients with rare skin disorders, can apply for the educational grant.

The eligible countries are: Bulgaria, Cyprus, Estonia, Greece, Latvia, Luxembourg, Malta, Portugal, Slovakia, Slovenia. The deadline for applications has been extended to 6 July.

Applicants must submit a project that aims at improving health care and social support of patients with rare or low prevalence skin diseases. Research projects are not eligible for the grant.

More information about the grant

Application form

The course will be held at Auditorium San Paolo, Viale Ferdinando Baldelli 38, Rome.

Transportation to Bambino Gesù Hospital, Rome

From the airport

Fiumicinio Airport is a 30-minute drive away from Rome city centre. Fares for taxi rides from the airport to the city center are fixed and can be found on the Aeroporto di Roma website.

Special bus and train services are also available. Information on times and fees is available on the airport’s website.

From the city centre

The Bambino Gesù Hospital is near the Basilica S. Paolo stop on Metro Line B and the Baldelli stop on Bus lines 128, 669 and 766.

Map of Rome public transportation

The following hotels offer special rates for training participants. They are located in the city center, near metro lines for easy access to Bambino Gesù Hospital:

Oly Hotel

Address: Via Santuario Regina degli Apostoli 36 – 00145 Rome

Tel: +39 06 59 444 1

E-mail: info(at)olyhotel.it

Website

Price per night:

DUS – double as single use room: €90
DBL – double room: €110
City tax: €6/person/night

How to reach congressional venue: On foot (15 mn)

Deadline: 30 June 2018

How to book: Follow this link

Hotel Cecil

Address: Via Francesco Crispi, 55 – 00187 Rome

Tel: +39 06 67 97 998

E-mail: info(at)hotelcecil.it

Website

Price per night:

DUS: €100
DBL: €100
City tax: €4/person/night

How to reach congressional venue: By underground – Line A from BARBERINI to TERMINI, then Line B from TERMINI to SAN PAOLO

Deadline: 15 May 2018

How to book: Write “Congress” next to the reservation dates, on the hotel website.

Hotel Forum

Address: Via Tor’ de Conti, 25-30 –
00184 Rome

Tel: +39 06 67 92 446

E-mail: info(at)hotelforum.com

Website

Price per night:

DUS: €140
DBL: €180
City tax: €6/person/night

How to reach congressional venue: By underground – Line B from CAVOUR to SAN PAOLO

Deadline: 30 June 2018

How to book: Call the hotel at +39 06 67 92 446 or write an e-mail to info(at)hotelforum.com specifying “BAMBIN GESU”

Hotel Cicerone

Address: Via Cicerone, 55/C, 00193 Roma

Website

Price per night:

DUS: €100
DBL: €130
City tax: €6/person/night

How to reach congressional venue: By underground – Line A from LEPANTO to TERMINI – Line B from TERMINI to SAN PAOLO

Deadline: 30 June 2018

How to book: Call the hotel at +39 06 3576 or write an e-mail to booking(at)hotelcicerone.com specifying “ERNSKIN C”

Hotel San Paolo

Address: Via Colossi, 50, 00146 Roma

Website

Price per night:

Non-refundable pre-paid rate

DUS: €146
DBL: €166

Possible cancellation rate

DUS: €170
DBL: €190
City tax: €6/person/night

How to reach congressional venue: On foot (2 minutes)

Deadline: 16 July 2018

How to book: Call the hotel at +39 06 88 80 78 00 or write an e-mail to info(at)hotelsanpaoloroma.com specifying your participation to the meeting from 23 to 25 November 2018 at Ospedale Pediatrico Bambino Gesù – San Paolo.

For any inquiries, please contact:

Please fill the following form to register for the 2018 ERN-Skin Training

 

The training is free of charge, but registration is mandatory before 30 October 2018.

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