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Organiser

ERN Skin Coordination

Venue

Hôpital Necker – Enfants Malades

149 Rue de Sèvres, 75015 Paris

Welcome to the 2019 ERN Skin Annual Board Metting

Dear friend and colleagues, we are very happy to welcome you in Paris for our 2019 Board Meeting, and we hope that many of you will be able to attend.
The past year has really been fruitful for the ERN-Skin, and we have made great progress in how we share information and improve patient care. Transdisciplinarity is and will remain a fundamental point in our action, and a large part of this meeting will focus on this fundamental issue.
The ERN-Skin will soon welcome new members. This will provide an opportunity to reach new patients more effectively and to integrate new skills. It will also lead us to use more efficiently the exchange tools provided by the ERNs, to clarify our processes, and to ensure easy integration with new healthcare providers.
On the first day, thematic groups sessions will be an opportunity to discuss concrete issues that we all face in our daily practice, and to detail new methods that enrich our response to different pathologies.
The basis of our mission also consist in the widest possible dissemination of clinical and therapeutic information. Thus, the last part of our meeting will be open to all health professionals, including medical students, beyond the ERN-Skin Network.
My whole team is looking forward to welcoming you for these two days that will show the dynamism and commitment of our ERN, and will allow us to move forward together.

See you soon.

Christine Bodemer

ERN-Skin coordinator

Program

8:30 am
9:00 am
9:30 am
10:00 am
10:30 am
11:00 am
11:30 am
12:00 pm
12:30 pm
1:00 pm
1:30 pm
2:00 pm
2:30 pm
3:00 pm
3:30 pm
4:00 pm
4:30 pm
5:00 pm
5:30 pm
6:00 pm
6:30 pm
7:00 pm
7:30 pm
8:00 pm
8:30 pm
3rd of October
3rd of October
Registration & welcome coffee
8:30 am - 9:00 am
<strong>Room : Amphithéâtre Robert Debré - Lobby</strong>
Room
Amphithéâtre Robert Debré - Lobby

SPOT app test
9:00 am - 10:30 am
Invitation Only<br><strong>Room : Amphithéâtre Robert Debré</strong>
Room
Amphithéâtre Robert Debré

Break
10:30 am - 11:00 am
<strong>Room : Amphithéâtre Robert Debré</strong>
Room
Amphithéâtre Robert Debré

Thematic group meeting + Orphanet
11:00 am - 1:00 pm
Epidermolysis Bullosa<br><strong>Room : Amphithéâtre Robert Debré</strong>
Room
Amphithéâtre Robert Debré

Epidermolysis Bullosa

Thematic group meetings + Orphanet
11:00 am - 1:00 pm
Cutaneous Mosaic Disorders <br><strong>Room : Kirmisson</strong>
Room
Kirmisson

Cutaneous Mosaic Disorders

Thematic group meetings + Orphanet
11:00 am - 1:00 pm
Hidradenitis suppurativa<br><strong>Room : Imagine 221 B</strong>
Room
Imagine 221 B

Hidradenitis suppurativa

Lunch
1:00 pm - 2:00 pm
<strong>Room : Amphithéâtre Robert Debré</strong>
Room
Amphithéâtre Robert Debré

Thematic group meetings + Orphanet
2:00 pm - 4:00 pm
Severe cutaneous drug reactions<br><strong>Room : Kirmisson</strong>
Room
Kirmisson

Severe cutaneous drug reactions

Thematic group meeting + Orphanet
2:00 pm - 4:00 pm
Ectodermal Dysplasias<br><strong>Room : Amphithéâtre Robert Debré</strong>
Room
Amphithéâtre Robert Debré

Ectodermal Dysplasias

Thematic group meeting + Orphanet
2:00 pm - 4:00 pm
Mendelian Causes of Connective Tissue Disorders<br><strong>Room : Imagine 221 B</strong>
Room
Imagine 221 B

Mendelian Causes of Connective Tissue Disorders

Break
4:00 pm - 4:30 pm
<strong>Room : Amphithéâtre Robert Debré</strong>
Room
Amphithéâtre Robert Debré

Thematic group meeting + Orphanet
4:30 pm - 6:30 pm
Autoimmune bullous diseases<br><strong>Room : Kirmisson</strong>

Autoimmune bullous diseases

Thematic group meeting + Orphanet
4:30 pm - 6:30 pm
Ichthyosis & Palmoplantar Keratoderma<br><strong>Room : Salle de Staff</strong>
Room
Salle de Staff

Ichthyosis & Palmoplantar Keratoderma

Thematic group meeting + Orphanet
4:30 pm - 6:30 pm
Cutaneous diseases related to DNA Repair Disorders<br><strong>Room : Imagine 221 B</strong>
Room
Imagine 221 B

Cutaneous diseases related to DNA Repair Disorders

Executive committee meeting
6:30 pm - 8:30 pm
This meeting is open to the ERN-Skin executive committee members<br><strong>Room : Salle de Staff</strong>
Room
Salle de Staff

This meeting is open to the ERN-Skin executive committee members

4th of October
4th of October
Registration & welcome coffee - Posters (achievement of thematic and transversal groups + ePAG)
8:30 am - 9:00 am
<strong>Room : Amphithéâtre Robert Debré - Lobby</strong>
Room
Amphithéâtre Robert Debré - Lobby

ERN-Skin at a glance
9:00 am - 10:30 am
<strong>Room : Amphithéâtre Robert Debré</strong><br><strong>09:00 - Welcoming</strong> – Christine BODEMER, Hôpital Necker Enfants Malades, Paris, France<br> <strong>ERN-Skin at a glance & 2019-2022 events</strong><br> <strong>09:15 - Registry</strong> – Johann BAUER, EB Haus, Salzburg, Austria - Catherine CHAMPSEIX, Hôpital Necker Enfants Malades, Paris, France<br> <strong>09:35 - European Joint Programme on Rare Diseases</strong> – Daria JULKOWSKA, Inserm<br> <strong>10:00 - Orpha codes</strong> – Houda ALI, Orphanet<br> <strong>10:20 - Discussion</strong><br>
Room
Amphithéâtre Robert Debré

09:00 - Welcoming – Christine BODEMER, Hôpital Necker Enfants Malades, Paris, France
ERN-Skin at a glance & 2019-2022 events
09:15 - Registry – Johann BAUER, EB Haus, Salzburg, Austria - Catherine CHAMPSEIX, Hôpital Necker Enfants Malades, Paris, France
09:35 - European Joint Programme on Rare Diseases – Daria JULKOWSKA, Inserm
10:00 - Orpha codes – Houda ALI, Orphanet
10:20 - Discussion

Skin ePAG
10:30 am - 11:00 am
<strong>Room : Amphithéâtre Robert Debré</strong><br>Plenary session
Room
Amphithéâtre Robert Debré

Plenary session

New classifications and guidelines
11:00 am - 12:00 pm
<strong>Room : Amphithéâtre Robert Debré</strong><br><strong>11:00 - New classification of epidermolysis bullosa and skin fragility disorders</strong> - Cristina HAS, Universitätsklinikum Freiburg, Germany<br> <strong>11:20 - New classification of ectodermal dysplasia</strong> - Holm SCHNEIDER, Universitätsklinikum Erlangen, Germany<br> <strong>11:40 - Mosaic abnormalities of the skin: review and guidelines from the European Reference Network for Rare Skin Diseases</strong> – Veronika KINSLER, Great Ormond Street Hospital for Children NHS Foundation Trust, United Kingdom
Room
Amphithéâtre Robert Debré

11:00 - New classification of epidermolysis bullosa and skin fragility disorders - Cristina HAS, Universitätsklinikum Freiburg, Germany
11:20 - New classification of ectodermal dysplasia - Holm SCHNEIDER, Universitätsklinikum Erlangen, Germany
11:40 - Mosaic abnormalities of the skin: review and guidelines from the European Reference Network for Rare Skin Diseases – Veronika KINSLER, Great Ormond Street Hospital for Children NHS Foundation Trust, United Kingdom

Lunch + Posters (achievement of thematic and transversal groups + ePAG)
12:00 pm - 1:00 pm
<strong>Room : Amphithéâtre Robert Debré</strong>
Room
Amphithéâtre Robert Debré

Training course
1:00 pm - 2:20 pm
<strong>Vascularisation & Dermatology - Interventional radiology</strong><br><strong>Room : Amphithéâtre Robert Debré</strong><br><strong>13:00 - Regulation of dermis vascularisation by growth factors and microenvironment</strong> - Laurent MULLER - CIRB - CNRS/UMR7241 - INSERM U1050 Collège de France<br> <strong>13:20 - The benefit from a multidisciplinary approach (clinical situations), Experience from an Italian ERN-Skin healthcare provider</strong> - Massimo ROLLO, Ospedale Pediatrico Bambino Gesù, Rome, Italy<br> <strong>13:40 - The benefit from a multidisciplinary approach (clinical situations) Experience from a French ERN-Skin healthcare provider</strong> - Grégoire BOULOUIS, Interventional Radiologist, Hôpital Necker Enfants Malades, Paris, France<br> <strong>14:00 - Round Table & Discussion</strong>
Room
Amphithéâtre Robert Debré

13:00 - Regulation of dermis vascularisation by growth factors and microenvironment - Laurent MULLER - CIRB - CNRS/UMR7241 - INSERM U1050 Collège de France
13:20 - The benefit from a multidisciplinary approach (clinical situations), Experience from an Italian ERN-Skin healthcare provider - Massimo ROLLO, Ospedale Pediatrico Bambino Gesù, Rome, Italy
13:40 - The benefit from a multidisciplinary approach (clinical situations) Experience from a French ERN-Skin healthcare provider - Grégoire BOULOUIS, Interventional Radiologist, Hôpital Necker Enfants Malades, Paris, France
14:00 - Round Table & Discussion

Training course
2:20 pm - 3:40 pm
<strong>Ophthalmology & Dermatology - ERN-Skin/ERN-Eye joined session</strong><br><strong>Room : Amphithéâtre Robert Debré</strong><br><strong>14:20 - Eye and skin: overview of anatomy and pathophysiological pathways</strong> - Daniel BÖHRINGER, Universitätsklinikum Freiburg, Germany<br> <strong>14:40 - Innovation in ocular surface impairment associated with skin diseases</strong> - Dominique BREMOND-GIGNAC, Hôpital Necker Enfants Malades, Paris, France<br> <strong>15:00 - Ocular surface involvements in acquired and congenital skin blistering diseases: semiology and management</strong> - Eric GABISON, Fondation Ophtalmologique Adolphe de Rothschild<br> <strong>15:20 - Round Table & Discussion</strong>
Room
Amphithéâtre Robert Debré

14:20 - Eye and skin: overview of anatomy and pathophysiological pathways - Daniel BÖHRINGER, Universitätsklinikum Freiburg, Germany
14:40 - Innovation in ocular surface impairment associated with skin diseases - Dominique BREMOND-GIGNAC, Hôpital Necker Enfants Malades, Paris, France
15:00 - Ocular surface involvements in acquired and congenital skin blistering diseases: semiology and management - Eric GABISON, Fondation Ophtalmologique Adolphe de Rothschild
15:20 - Round Table & Discussion

Training course
3:40 pm - 4:45 pm
<strong>Oral medicine & Dermatology</strong><br><strong>Room : Amphithéâtre Robert Debré</strong><br><strong>15:40 - Oral manifestations and management of children with rare skin diseases</strong> - Bothild KVERNELAND, Hôpital Necker Enfants Malades, Paris, France<br> <strong>16:00 - Oral manifestations and management of autoimmune blistering diseases and SJS-TEN spectrum</strong> - Jane SETTERFIELD, Guy's and St Thomas' NHS Foundation Trust, United Kingdom<br> <strong>16:20 - Round Table & Discussion</strong>
Room
Amphithéâtre Robert Debré

15:40 - Oral manifestations and management of children with rare skin diseases - Bothild KVERNELAND, Hôpital Necker Enfants Malades, Paris, France
16:00 - Oral manifestations and management of autoimmune blistering diseases and SJS-TEN spectrum - Jane SETTERFIELD, Guy's and St Thomas' NHS Foundation Trust, United Kingdom
16:20 - Round Table & Discussion

End of the meeting
4:45 pm - 5:15 pm
Room
Lobby

4th of October

Registration

To register, please contact coordination@ern-skin.eu

Accommodation

Standard single room : 122€/night
Standard single room with a view : 132€/night
30€ additionnal fee for double occupancy
This rate includes :

  • Breakfast
  • Tourist tax

Hotel booking by email or phone until the event. Please make sure you tell the reception that you attend a Necker Hospital event.

Website : https://aberotelparishotel.com/fr/
Tel : + 33 (0)1 40 61 70 50
Email : aberotel@wanadoo.fr

Standard single room : 141€/night
This rate includes :

  • Breakfast

Tourist tax : 2.88€/day
Hotel booking by email, phone or on the hotel website with the code « ERN SKIN » until the event.

Website : https://www.hotel-madrigal.com/fr/
Tel : + 33 (0)1 47 34 70 47
Email : contact@hotel-madrigal.com

Standard single room : 179€/night
This rate includes :

  • Breakfast
  • Tourist tax

Hotel booking by email or phone with the code « ERN Skin ».

The reservation can be cancelled or changed until 2 full days prior scheduled arrival date.

Website : https://www.hotelviceiffel.com/en/
Tel : + 33 (0) 1 53 86 83 83
Email : contact@viceiffel.com

Standard single room : 169€/night
Premium single room : 189€/night
This rate includes :

  • Breakfast

Tourist tax : 1.88€/day
Hotel booking by email or phone with the code « CSO NECKER ».

You can also book this hotel on the website : https://elegancia-hotels.com/fr/ with the code « CSONECKER ».

Website : https://hotel-laparizienne.com/
Tel : + 33 (0)1 45 48 75 64
Email : contact@hotel-laparizienne.com

Standard single room : 195€/night
This rate includes :

  • Breakfast

Tourist tax : 1.88€/day
Hotel booking only by email with the code ERN SKIN from the 02/06/2019 to the 02/07/2019

Website : http://vaneausaintgermain.com/
Tel : + 33 (0)1 45 48 73 11
Email : hotel@vaneausaintgermain.com

Standard single room : 199€/night
This rate includes :

  • Breakfast

Tourist tax : 2.88€/day
Hotel booking by email or phone with the code « CSO NECKER ».

You can also book this hotel on the website : https://elegancia-hotels.com/fr/ with the code « CSONECKER ».

Website : https://bobhotelparis.com/
Tel : + 33 (0)1 40 43 02 33
Email : contact@bobhotelparis.com

Standard single room : 199€/night
Premium single room : 229€/night
This rate includes :

  • Breakfast

Tourist tax : 1.88€/day
Hotel booking by email or phone with the code « CSONECKER ».

You can also book this hotel on the website : https://elegancia-hotels.com/fr/ with the code « CSONECKER ».

Website : http://www.louison-hotel.com/
Tel : + 33 (0)1 53 63 25 50
Email : welcome@louisonhotel.com

Standard single room : 209€/night
This rate includes :

  • Breakfast

Tourist tax : 2.88€/day
Hotel booking by email or phone with the code « CSO NECKER ».

You can also book this hotel on the website : https://elegancia-hotels.com/fr/ with the code « CSONECKER ».

Website : https://legendhotelparis.com/
Tel : + 33 (0)1 45 48 97 38
Email : contact@legendhotelparis.com

Negotiated rates are not guaranteed to be the cheapest on the market at the time of booking. Please also consult Internet hotel reservation platforms.