We are grateful to the ORKiD Network and the Société de Néphrologie Pédiatrique for their assistance during the 2022 Rare Disease Research Seminar. We would like to sincerely thank the International Pediatric Nephrology Association, the European Rare Kidney Disease Reference Network, the European Society for Pediatric Nephrology, and the Cystinosis Network Europe for their valuable help in the distribution of the survey. The authors would also like to acknowledge all the medical and paramedical staff worldwide who took the time to answer this survey (in alphabetical order): W. Al Dhaheri (Al Ain, United Arab Emirates), F.A. Adekanmbi (Sagamu, Nigeria), O. Akasi (Bursa, Turkey), R.I. Almardini (Amman, Jordan), L. Annicchiarico Petruzzelli (Naples, Italy), C. Aparicio Lopez (Madrid, Spain), P. Arango Sancho (Barcelona, Spain), G. Ariceta (Spain), B. Atmis (Andana, Turkey), S. Bäumner (Cologne, Germany), V.M.S. Belangero (Campinas, Brazil), M. Besouw (Groningen, Netherlands), A. Bertholet-Thomas (Lyon, France), S. Bhatnagar (Wilmington, USA), R. Bhimma (Durban, South Africa), A. Bjerre (Oslo, Norway), D. Bockenhauer (London, United Kingdom), M. Boutaba (Algiers, Algeria), O. Boyer (Paris, France), L. Butani (Sacramento, USA), M. Cailliez (Marseille, France), B. Carmody (Norfolk, USA), D. Chauveau (Toulouse, France), C.H. Chen (Taichung, Taiwan), A. Coetzee (Cape Town, South Africa), E. A. M. Cornelissen (Nijmegen, Netherlands), B. Crawford (Little Rock, USA), S. Decramer (Toulouse, France), J. Dionne (Vancouver, Canada), G. Filler (London, Canada), A. Francis (South Brisbane, Australia), Y. Frishberg (Jerusalem, Israel), J. Gahona (Quito, Ecuador), S. Garimella (Greenville, USA), R. Ghabril (Beirut, Lebanon), V. Gillion (Bruxelles, France), C.X. Gong (Beijing, China), M. Greco (Naples, Italy), V. Guigonis (Limoges, France), I.R. Gupta (Montreal, Canada), D. Haffner (Hannover, Germany), J. Harambat (Bordeaux, France) , M. Herthelius (Stockholm, Sweden), H. Holla (Mainz, Germany), Israa (Mosul, Iraq), M. Jellouli (Tunis, Tunisia), L. Johnstone (Clayton, Australia), F. Kaskel (New York, USA), P. Krall (Santiago, Chile), K.V. Lieberman (Hackensack, USA) M. Lilien (Utrecht, Netherlands), F. Loachamin (Quito, Ecuador), F. Louillet (Rouen, France), R. Loza (Lima, Peru), D. Marx-Berger (St Gallen, Switzerland), M. McCulloch (Cape Town, South Africa), C. Mincham (Perth, Australia), A.A. Ndongo (Dakar, Senegal), O.A.F. Neto (Campo Grande, Brazil), O. Niel (Luxembourg), R. Novo (Lille, France), M.A. Obaid (Muscat, Oman), J. Oh (Hamburg, Germany), K.P. Olandoski (Curitiba, Brazil) N. Oulahiane (Rabat, Morocco), M. Pańczyk-Tomaszewska (Warsaw, Poland), L. Pape (Essen, Germany) S. Papizh (Moscow, Russia), H. Patel (Colombus, USA), L. Peruzzi (Torino, Italy), K. Petersen (Johannesburg, South Africa) S. Pradhan (Cuttack, India), M.A. Qader (Dhaka, Bangladesh), A. Raes (Ghent, Belgium), N. Ranguelov (Brussels, Belgium), P. Rianthavorn (Bangkok, Thailand), M.A. Rios (Buenos Aires, Argentina), A.G. Rojas (Sevilla, Spain), B. Saeed (Damascus, Syria), F. Santos (Oviedo, Spain), A. Sarkissian (Yerevan, Armenia) M.S. Saud (Lahore, Pakistan), A. Servais (Paris, France), F. Shabib (Manama, Bahrain), P. Sikora (Lublin, Poland), J. Singhal (Pune, India), K. Soulami (Casablanca, Morocco), S. Stabouli (Thessaloniki, Greece), H. Stewart (Charleston, USA), L. Sylvestre (Curitiba, Brazil), W. Tan (Boston, USA), V. Tasic (Skopje, Macedonia), S. Testa (Milano, Italy), A. Teixeira (Porto, Portugal), N. Thaker (Ahmedabad, India), M. Tinatin (Tbilisi, Georgia), M. Tkaczyk (Łodz, Poland), H. Togashi (Yokohama, Japan), R. Topaloglu (Ankara, Turkey), K. Twombley (Charleston, USA), B. Valenciano Fuente (Las Palmas de Gran Canaria, Spain) J. Vara (Madrid, Spain), C. Vincent (Arlington, USA), R.W.G. Van Rooij (Leiden, Netherlands) R. Von Vigier (Biel-Bienne, Switzerland), I. Vrillon (Nancy, France), B. Warshaw (Atlanta, USA), W. Wong (Auckland, New Zealand), S. Yüksel (Denizli, Turkey).