Multidisciplinary, multicenter consensus for the care of patients affected with Sturge–Weber syndrome
The present consensus developed by a multidisciplinary group of experts from Italian reference centres comprises practical recommendations for SWS global management, including currently controversial issues. Specific statements for all disease aspects, from skin manifestations and neurological and ocular signs and symptoms to oral and maxillofacial care, are provided. They can be exploited to uniform clinical practice in reference centres, but also in other hospitals and outpatient settings. Though this consensus has been developed taking primarily into account the Italian National Health System organization and rules on rare disorders, it could be translated also to other countries.
Authors
- Luca De Palma (ORCID: https://orcid.org/0000-0002-0714-8230)
- Federica Marraffa (ORCID: https://orcid.org/0000-0003-0006-7646)
- Angela Galeotti (ORCID: https://orcid.org/0000-0001-6433-4788)
- Marta Luisa Ciofi degli Atti (ORCID: https://orcid.org/0000-0001-6492-4497)
- Alessandro Consales (ORCID: https://orcid.org/0000-0002-4354-6906)
- Lorenzo Trevisiol (ORCID: https://orcid.org/0000-0002-2732-238X)
- Laura Longaretti
- Maria Margherita Mancardi (ORCID: https://orcid.org/0000-0001-5122-4029)
- Rosa Longo (ORCID: https://orcid.org/0000-0001-7619-3281)
- Francesco Aristei (ORCID: https://orcid.org/0009-0001-9388-9798)
- Federico Vigevano (ORCID: https://orcid.org/0000-0001-7513-0051)
- Carlo Efisio Marras (ORCID: https://orcid.org/0000-0003-0790-8903)
- Francesca Grussu
- Lodovica Gariazzo (ORCID: https://orcid.org/0000-0001-7579-0121)
- Lino Nobili (ORCID: https://orcid.org/0000-0001-9317-5405)
- Andrea Diociaiuti (ORCID: https://orcid.org/0000-0003-0879-9825)
- Matteo Federici (ORCID: https://orcid.org/0000-0002-7878-7224)
- Giuseppe Kenneth Ricciardi (ORCID: https://orcid.org/0000-0001-8536-5794)
- Carmen D’Amore (ORCID: https://orcid.org/0000-0003-2874-7563)
- Mariasavina Severino (ORCID: https://orcid.org/0000-0003-4730-5322)
- Urbano Urbani
- Giorgio Marchini (ORCID: https://orcid.org/0000-0002-4657-3168)
- Donatella Schena
- Eleonora Pedrazzoli
- Elena Fontana (ORCID: https://orcid.org/0000-0002-4553-2452)
- Davide Vecchio (ORCID: https://orcid.org/0000-0003-2907-3206)
- Gaetano Cantalupo (ORCID: https://orcid.org/0000-0003-1343-8434)
- Alessandro Ferretti (ORCID: https://orcid.org/0000-0002-3854-9299)
- May El Hachem (ORCID: https://orcid.org/0000-0002-8145-4797)
- C. Occella (ORCID: https://orcid.org/0000-0001-5960-3808)
- Erika Rigotti (ORCID: https://orcid.org/0009-0005-1639-8951)
- Giacomo Brisca (ORCID: https://orcid.org/0000-0001-7992-0181)
- Simona Cappelletti (ORCID: https://orcid.org/0000-0003-0738-1240)
- Carlo Gandolfo (ORCID: https://orcid.org/0000-0003-1703-9107)
- Enrico Priolo
- Elena Gusson (ORCID: https://orcid.org/0000-0002-2350-6560)
- Alessandra Biolcati Rinaldi
- Simone Reali
- Thea Giacomini
- Nicola Laffi
Institutions
- University of Verona (IT)
- Istituto Giannina Gaslini (IT)
- Pathways Behavioral Services (US)
- Bambino Gesù Children's Hospital (IT)
- Istituti di Ricovero e Cura a Carattere Scientifico (IT)
- Sapienza University of Rome (IT)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-01-16
- DOI
- https://doi.org/10.1186/s13023-024-03527-w
- Citations
- 11
- Primary Topic
- Vascular Malformations and Hemangiomas
- Type
- article
- Field-Weighted Citation Impact
- 22.07
Funders
- Ospedale Pediatrico Bambino Gesù
- Ministero della Salute
- Università degli Studi di Trento
- Università degli Studi di Genova
- Università degli Studi di Verona