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

08h00 - 9h00 Welcome

08:00 – 08:45             REGISTRATION AND WELCOME COFFEE

08:45 – 09:00             WELCOME

Massimiliano Raponi, Health Director, Ospedale Pediatrico Bambino Gesù

 

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

11h00 – 12h30 Epidermolysis Bullosa

Co-chairs: Johann Bauer, Marcel Jonkman

11h00-11h30 : Clinical cases

11h00 – Facing the challenges of managing Laryngo-onchyo-cutaneous syndrome
Cassandra McDonald

11h05 – Mild clinical phenotype in infants unravels EB genotype
Irina Condrat

11h10 – Recessive Dystrophic EB inversa: marked mucosal phenotype with limited cutaneous involvement
Sorcha O’Sullivan

11h15 – Cardiomyopathy in epidermolysis bullosa simplex patients with KLHL24 mutations: an intriguing association
Vamsi Yenamandra

11h20 – Recessive forms of dystrophic Epidermolysis Bullosa and anemia: a complex therapeutic challenge
Lilia Bekel

11h25 – JEB gen sev – unexpected natural histories
Christine Prodinger

11h30 – Discussion and comments

Johann Bauer, Marcel Jonkman

12h00 – Update on EB types and therapies

Christina Has

12h30-13h30 : Light Lunch Buffet

13h30 – 15h00 Ichthyosis & Palmoplantar Keratoderma

Co-chairs: May El Hachem, Kathrin Giehl

13h30-15h30 : Clinical cases

13h30 – Clinical case on the Neonatal management of a collodion baby
Aurore brun

13h35 – Clinical case on the use of tazarotene
Luana Niculescu

13h40 -Clinical case on itch in ichthyoses
Ifigenia Spanoudi

13h45 – Clinical case on Netherton syndrome
Nathalia Bellon

13h50 – Clinical case on extending the spectrum of autosomal epidermolytic ichthyosis

Leonie Frommherz

13h55 – Clinical case on the treatment of Palmoplantar Keratoderma
Bjorn Thomas

14h00 – Discussion and comments

Kathrin Giehl

14h30 – Management of congenital ichthyosis in 2018

Juliette Mazereeuw-Hautier

15h00 – 16h30 Ectodermal Dysplasias including Incontinentia Pigmenti and p63-associated disorders

Co-chairs: Christine Bodemer, Angus Clarke

15h00-15h50 : Clinical cases

15h00 – A woman with severe autosomal-dominant hypohidrotic ectodermal dysplasia
Monika Ettinger

15h05 – Ectodermal dysplasia with extreme palmoplantar hyperkeratosis in a young man
Julia Hiernickel

15h10 – Management of tooth abnormalities in a patient with X-linked hypohidrotic ectodermal dysplasia
Ajit Tanday

15h15 – Dermatological findings in patients with p63 deficiency
Alexia Maillard

15h20 – Sweating ability of patients with EEC and AEC syndrome
Paul Ferstl

15h25 – Ocular care in patients with incontinentia pigmenti
Sarah Michel

15h30 – Discussion and comments

Holm Schneider

16h00 – Update on ED types and therapies

Smail Hadj-Rabia

n

16h30-17h00 : Discussion and conclusions of the training and announcement of the next one

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

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.

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 September 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: 30 September 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 (VAT and lunch included):

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: 6 October 2018

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

(50 rooms available for the nights of November 23th and 24th ; 10 for the nights of November 20th, 21st and 22th)

Payment method: Deposit the first night by credit card charged the 06.10.18, then payment of remainder,stay tax and potential extra when leaving

Cancellation rule: Before 05.10.18 at 6.pm, the first night is charged ; After 05.10.18 at 6.pm, all nights are charged.

Hotel San Paolo

Address: Via Colossi, 50, 00146 Roma

Website

Price for 2 nights (including VAT and breakfast; city tax not included):

Non-refundable pre-paid rate

DUS: €146 (2 nights)
DBL: €166 (2 nights)

Possible cancellation rate

DUS: €170 (2 nights)
DBL: €190 (2 nights)
City tax: €6/person/night

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

Deadline: 10 September 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 21 to 23 November 2018 at Ospedale Pediatrico Bambino Gesù – San Paolo. Credit card info will be required for booking.

For the guests choosing the Non-refundable pre-paid rate, the full price will be withdrawn from the guest’s account. That sum will be not be returned in case of cancellation. Guests who do not have credit cards may make a bank transfer.

Guests choosing the Possible cancellation rate allow the hotel to pre-pay the cost of the first night 3 days before arrival. The rest of the price will be paid when the guest checks in. Up to 3 days before arrival, the guest may cancel their booking without fees. Any modifications or cancellations past that date will result in the full cost of the first night being charged.

For any inquiries, please contact:

genodermatoses

  • Time: 15:00 to 18:00
  • Place: Auditorium San Paolo, Viale Ferdinando Baldelli 38, Rome, Italy Rome, Italy
  • Attendance: this meeting is open to the chairs of the thematic and transversal groups and to 2 Skin e-PAG representatives.
  • Registration is mandatory. Please contact coordination@ern-skin.eu
  • Programme: 
    13:00 – 15:00 General Coordination – Light Lunch
    15:00 – 16:45 Executive Committee
    16:45 – 17:00 Break
    17:00 – 18-00 Executive Committee – Registry
    18:00 Light Dinner Buffet

genodermatoses

 

  • Time: 9:30 to 16:30
  • Place: Auditorium San Paolo, Viale Ferdinando Baldelli 38, Rome, Italy Rome, Italy
  • Attendance: this meeting is open to the ERN-Skin healthcare provider representatives, the members of leader team of the thematic and transversal group, 2 patient representatives per thematic group
  • Registration is mandatory. Please contact at coordination@ern-skin.eu
  • Programme:
    • 09:30 – 10:00            Registration & Coffee
    • 10:00 – 10:30            Welcome – Information
    • 10:30 – 12:30            Meeting of each thematic group – Activity report & next steps
    • 12:30 – 13:30            Lunch / Patient Groups’ meeting / Poster session
    • 13:30 – 14:00            Update on each groups’ achievements
    • 14:00 – 16:30            Scientific meeting: 15 minute presentation per thematic group on recent high-level scientific developments that could lead to common projects at the ERN-Skin level: 14:00 – 14:15 Epidermolysis Bullosa
      14:15 – 14:30 Ichthyosis & Palmoplantar Keratoderma
      14:30 – 14:45 Ectodermal Dysplasias including Incontinentia Pigmenti and p63-associated disorders
      14:45 – 15:00 Mendelian connective tissue disorders
      15:00 – 15:15 Cutaneous Mosaic Disorders – Nevi & Nevoid Skin Disorders and Complex Vascular Malformations and vascular Tumours, V. Kinsler
      15:15 – 15:30 Cutaneous diseases related to DNA Repair Disorders,
      15:30 – 15:45 Autoimmune bullous diseases
      15:45 – 16:00 Severe cutaneous drug reactions
      16:00 – 16:15 Hidradenitis suppurativa – PAPA, PAPASH, PASH, PASS, SAPHO – Behçet, Degos
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