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Consensus recommendations on organization of care for individuals with Phelan-McDermid syndrome
ERN ITHACA Guideline Working Group, European Phelan-McDermid syndrome guideline consortium
- European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability (ERN-ITHACA)
- European Phelan-McDermid Syndrome Consortium (Coordinated by Conny van Ravenswaaij-Arts)
- University of Groningen
- University of Amsterdam
- ‘s Heeren Loo
- VSOP - National Patient Alliance for Rare and Genetic Diseases
- Neonatology Unit. Hospital General Universitario Santa Lucía
- APHP
- Defiscience
- University of Pecs
- Jonx
- Phelan-McDermid Association
- Karolinska Institutet
- MVZ Karlsplatz
- Leiden University
- Phelan-Mcdermid Association (Associação Síndrome Phelan-Mcdermid)
- IRCCS Istituto Eugenio Medea - Bosisio Parini (LC)
- Université Paris Cité
- Hospital General Universitario Gregorio Marañon
- Universidad Autónoma de Madrid
- Phelan-McDermid Association
- King's College London
- Nij Smellinghe Hospital
- Maastricht University
- Uniphelan association Syndrome Phelan McDermid
- University of Manchester
- Linköping University
- Amsterdam UMC - University of Amsterdam
- Ulm University
- Erasmus University Rotterdam
- Center for Biomedical Research on Rare Diseases
- University Hospital La Paz Madrid
- St George's Healthcare NHS Trust
- St. George's Hospital Medical School
- University of Catania
- Scientific Foundation and Clinic G. B. Morgagni
- Vilnius University
- National Research Council of Italy
- Complutense University
- KU Leuven
- Institut Pasteur Paris
- Patient Representative
- Phelan-McDermid Syndrome Foundation UK
- Pôle de Biologie
- ERN ITHACA Project Management & Legal Office
Research output: Contribution to journal › Article › peer-review