EB Clinet Conference 2024: Programme
The full EB Clinet Conference 2024 programme will feature a mixture of topics important to the medical EB community.
| Thursday 17 October 2024 | |||
|---|---|---|---|
| 08:00 - 12:30 Registration | |||
| Inflamation in EB Chairs: Peter Marinkovich, Marieke Bolling | 09:00 - 09:05 | Welcome and opening day 1 | Sophie Kitzmüller |
09:05 - 09:50 | Keynote lecture: Inflammatory features on EB | John McGrath | |
09:50 - 10:10 | Biological agents and JAK inhibitors for dystrophic epidermolysis bullosa | Chao-Kai Hsu | |
10:10 - 10:30 | Novel therapies targeting inflammation in EB | Dimitra Kiritsi | |
| Coffee break | |||
| Sponsor symposium | 11:00 - 11:30 | Sponsor Symposium | |
Clinical research projects
Chairs: | 11:30 - 11:45 | Current clinical trial landscape in EB | John McGrath |
11:45 - 12:00 | COSEB | Marieke Bolling | |
| 12:00 - 12:10 | Measuring outcomes in epidermolysis bullosa - a regulatory perspective | Marjon Pasmooij | |
12:10 - 12:30 | Revertant Mosaicism | Ken Natsuga | |
| Lunch | |||
Clinical management strategies I
Chairs: | 13:30 - 13:50 | Clinical and molecular diagnosis methods for EB | Cristina Has |
13:50 - 14:10 | Neonatal care | Rebecca Saad | |
14:10 - 14:30 | Anemia | Anna Bruckner | |
14:30 - 14:50 | Opthalmological care options | Michael Baertschi | |
14:50 - 15:10 | Dental care | Sebastián Véliz Méndez | |
15:10 - 15:30 | Pain treatment | Nicholas Schräder | |
| Coffee break | |||
Multidisciplinary care models
Chairs: | 16:00 - 16:20 | Importance of multidisciplinary care - Best practice example EB House Austria | Tobias Welponer |
16:20 - 16:40 | Managing EB in resource limited settings | Dharshini Sathishkumar | |
16:40 - 17:00 | Transition from pediatric to adult care | Anna Martinez & Janet Hanson | |
17:00 - 17:20 | Benefits of community outreach nurses/home care nurses | Alvaro Villar | |
| 17:20 - 17:30 | Psychosocial needs of EB patients and families | Gudrun Salamon | |
| Close | |||
| 19:30 - 22:30 Networking Evening | |||
Friday, 18 October 2024 | |||
|---|---|---|---|
Cancer in EB
Chairs: Gabriela Petrof | 09:00 - 09:10 | Welcome and opening day 2 | Sophie Kitzmüller |
09:10 - 09:55 | Keynote lecture: Current knowledge about cancer biology in EB | Andrew South | |
09:55 - 10:15 | Current standards for SCC diagnosis and treatment | Jemima Mellerio | |
10:15 - 10:30 | Current novel/tested treatment agents for SCC | Johann Bauer | |
| Coffee break | |||
| Gene therapy | 10:50 - 11:30 | Approved and upcoming gene therapy approaches for EB | Peter Marinkovich |
Surgical interventions in EB
Chairs: Chao-Kai Hsu | 11:30 - 11:50 | Oesophageal strictures | Athanasios Diamantopoulos |
| 11:50 - 12:10 | Gastrostomy | Agnes Schwieger-Briel | |
12:10 - 12:30 | Hand surgery | Paige Fox | |
12:30 - 12:50 | Anaesthesia | Michael Duncan | |
| Photo | 12:50 - 13:00 | Group photo | Ludwig Schedl |
| Lunch | |||
Clinical management strategies II
Chairs: | 13:50 - 14:10 | Occupational therapy/Ergotherapy | Jennifer Chan |
14:10 - 14:30 | Psychological support for patients and families | Joanna Willen | |
14:30 - 14:50 | Nutrition | Natalie Yerlett | |
14:50 - 15:10 | Podiatry | Tariq Khan | |
15:10 - 15:30 | Pregnancy, childbirth and aftercare | Mauricio Torres-Pradilla | |
15:30 - 15:50 | Palliative care | Mark Popenhagen | |
| Coffee break | |||
Spotlight EB Simplex
Chair: | 16:15 - 16:45 | Care plans for EBS patients (including rare EBS subtypes) | Cristina Has |
16:45 - 17:05 | Genotype–phenotype correlations in EBS with KRT5 and KRT14 mutations | Christine Chiaverini | |
| 17:05 - 17:15 | Conference Closing Remarks | Sophie Kitzmüller | |
| Close | |||
Professionals Forums | |||
|---|---|---|---|
| Thursday, 17 October 2024 | 10:00 - 12:30 | Nursing Care in EB | Jose Duipmans & Sharon Cassidy |
13:30 - 16:00 | Occupational Therapy in EB | Alex King | |
| Friday, 18 October 2024 | 10:00 - 12:30 | Nutrition in EB | Natalie Yerlett & Jennifer Philipps |
Open Session Philanthropic Drug Development in EB – learning from the past for the future | |||
|---|---|---|---|
Friday, 18 October 2024
Chairs: Sagair Hussein, | 13:50 - 13:55 | Opening remarks | Sagair Hussein/ DEBRA UK, Christoph Coch/ DEBRA Research |
| 13:55 - 14:05 | Introduction to "Philanthropic Drug Development" | Marc Reichel/ DEBRA Research | |
| 14:05 - 14:20 | Case study "Cystic Fibrosis Foundation" | Emily Zagnit/CFF | |
| 14:20 - 14:35 | The patient organization perspective on drug development in EB | Ritu Jain/ DEBRA International | |
| 14:35 - 14:50 | The industry perspective on drug development in EB | Suma Krishnan/ Krystal Biotech | |
| 14:50 - 15:05 | The academia perspective | Peter Marinkovich/ Stanford University | |
| 15:05 - 15:20 | Philanthropic drug development in EB: Translation from concept to commercial collaborations | Martin Steiner/ DEBRA Research | |
| 15:20 - 15:50 | Podium discussion – How to improve the drug development paradigm in EB? | all speakers together with audience | |
Information about the Networking Evening
The Networking Evening - a buffet dinner with classical Austrian cuisine - will bring together a large number of participants and provides the opportunity for in-depth discussions and professional dialogue with experts in a nice athmosphere.
Join us at the Networking Evening on Thursday, 17 October 2024 directly at the conference venue Vienna Marriott Hotel and take the chance to exchange with colleagues and potential cooperation partners and to discuss project ideas or complicated cases.
When: Thursday 17 October 2024
Time: approximately 19:30 – 22:30
Where: Vienna Marriott Hotel | Parkring 12A | 1010 Vienna | Austria | Vienna Marriott Website
Tickets: 85,- EUR; including a welcome drink, a buffet dinner with classical Austrian cuisine and selected drinks.
Seats: Limited number of seats.
Special diets: Limited vegan and gluten free options are available. Unfortunately, the caterer cannot accommodate any other special dietary requirements.
Dress code: Smart casual.
Please note: It will not be possible to purchase tickets for the conference dinner on site. Subject to availability, tickets can be purchased via the registration link until 30 September.
Tickets for the conference dinner are non-refundable. Please remember to bring your dinner ticket to the dinner.
