Membership is open to clinical investigators who serve undiagnosed disease patients from all countries.
Members agree to adhere to the principles mentioned in the “General Description”.
Membership List, ordered alphabetically by Country name.
Streitenberger Gisela
Alapa
Baynam, Gareth
Genetic Services of Western Australia; School of Paediatrics and Child Health (University of Western Australia); Office of Population Health Genomics (Department of Health)
Dudding-byth Tracy
Hunter New England Local Health District And Nsw Genetics Of Learning Disability Service
Ewans, Lisa Jean
Sydney Children'S Hospital Network - Randwick, Royal Prince Alfred Hospital, Camperdown
McGaughra, Julie
Genetic Health Queensland
Palmer, Elizabeth
Sydney Children'S Hospital Network
Boztug, Kaan
Medical University of Vienna, Dept of Pediatrics and Adolescent Medicine, Vienna Ludwig Boltzmann Institute for Rare and Undiagnosed Diseases, Vienna St. Anna Children’s Cancer Research Institute, Vienna
Milenkovic Ivan
Department Of Neurology, Medical University Vienna
Nagy Vanja
Ludwig Boltzmann Institute For Rare And Undiagnosed Diseases, Austria
Stary Georg
Ludwig Boltzmann Institute For Rare And Undiagnosed Diseases (Lbi-rud)
Mammadbayli Aytan
Azerbaijan Medical University
Skrypnyk Cristina
Al Jawhara Center For Molecular Medicine, Arabian Gulf University
Cassiman, David
University Hospitals (UH), Leuven
Poppe, Bruce
Ghent University
Giugliani, Roberto
House of Rares, Porto Alegre, Brazil
Lourenco Charles
Brazilian National Reference Center For Rare Diseases - Faculdade De Medicina De São José Do Rio Preto (Famerp)
Nociti Francisco
São Leopoldo Mandic - School Of Medicine And Dentistry - Brazil
Kameranova, Kunka
Molecular Medicine Center, Medical University of Sofia
Stefanov, Rumen
Medical University of Plovdiv
Brudno, Michael
Sick Kids, Toronto
Lasko, Paul
Canadian Institutes for Health Research Institute of Genetics, Department of Biology, McGill University, Montreal
Castiglioni, Claudia
Clinica Las Condes
Repetto, Gabriela
Clinica Alemana-Universidad del Desarrollo & Clinica Alemana, Santiago
Liu, Zhi-Hong
Zhejiang Univ
Ourani Sofia
Hospital Archbishop Makarios Iii, Nicosia, Cyprus
Macek Milan
National Coordination Centre For Rare Diseases - Motol University Hospital Of 2nd Faculty Of Medicine, Charles University Prague
Lumaka Aime
Centre De Référence Des Maladies Rares Et Non Diangostiquées (DRC)
Tumer Zeynep
Department Of Clinical Genetics, Kennedy Center, Copenhagen University Hospital, Rigshospitalet
Llamos Paneque, Arianne
Servicio de Genetica Medica, Hospital de Especialidades No1. FfAa, Quito
Romero, Vanessa
Universidad San Francisco de Quito
Zaki Maha
Clinical Genetics Department, National Research Centre
Faivre, Laurence
Dijon University Hospital
Ferri Joel
Universite Nord De France Faculte De Medicine
Kardava Anzhelika (trainee)
Khvedelidze Khatia
Tbilisi State Medical University
Kvaratskhelia Eka
Tbilisi State Medical University
Kvlividze, Oleg
School Of Medicine, New Vision University; Georgian Foundation For Genetic And Rare Diseases (Gerad)
Pagava Karaman
Tbilisi State Medical University
Tkemaladze Tinatin
Tbilisi State Medical University
Riess, Olaf
Institute of Human Genetics and Applied Genomics, University of Tübingen
Yepez Vicente
Technical University Of Munich
Wiafe Samuel
Rare Disease Ghana Initiative, Mpraeso - Kwahu
Avram Paula
Sheffield Children' S Hospital Nhs Foundation Trust
Banka Siddharth
University Of Manchester
Dias Cristina
King'S College London And Guy'S & St. Thomas' Nhs Foundation Trust
Warren Alan
University Of Cambridge
Chung, Hon Yin (Brian)
Queen Mary Hospital
Hadzsiev Kinga
University Of Pécs, Medical Center
Melegh, Bela
University of Pecs
Sümegi Katalin
University Of Pécs
Dalal Ashwin
Centre For Dna Fingerprinting And Diagnostics
Datta Dipanjana
Apollo Multispecialty Hospital Neotia Bhagirathi Women and Child Care Hospital, NewTown, Kolkata
Gupta Neerja
Aiims, New Delhi
Puri, Ratna
Institute of Medical Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi
Scaria, Vinod
CSIR Institute of Genomics and Integrative Biology, Genomics for Understanding Rare Diseases India Alliance Network (GUaRDIAN28.6784994549033, 77.30535496847259
Singh, Kuldeep
All India Institue of Medical Sciences
Anikster, Yair
The Edmond and Lily Safra Childrens Hospital
Marom Daphna
Genetics Institute, Tel Aviv Sourasky Medical Center
Raas-rothschild Annick
Sheba Medical Center
Caltagirone Carlo
Irccs Fondazione Santa Lucia
Coviello Domenico
Irccs Istituto Giannina Gaslini, Genova
Dallapiccola, Bruno
Bambino Gesù Children Hospital (OPBG), Rome
Dario Roccatello
Cmid, University Centre Of Rare Diseases, San Giovanni Bosco, Torino Italy
Fancellu Roberto
Clinical Center For Diagnosis Orphan Patients, Irccs Ospedale Policlinico San Martino, Genova, Italy
Guaraldi Pietro
Irccs Istituto Delle Scienze Neurologiche Di Bologna
Maines Evelina
Pediatric Unit, Azienda Provinciale Per I Servizi Sanitari, Trento, Italy
Marchionni Enrica
Policlinico Tor Vergata Hospital, Rome, Italy
Nigro, Vincenzo
Telethon
Novelli Giuseppe
Medical Genetics Unit, Tor Vergata University Of Rome, Italy
Polizzi Agata
Department Of Educational Science/Unit Of Rare Diseases Of The Nervous System In Childhood, University Of Catania, Italy
Remuzzi Giuseppe
Istituto Di Ricerche Farmacologiche Mario Negri Irccs, Clinical Research Center For Rare Diseases "Aldo E Cele Daccò", 24020 - Ranica (Bergamo) Italy
Renieri, Alessandra
Medical Genetics Unit, University Hospital of Siena
Salvatore Marco
Istituto Superiore Di Sanita' National Center For Rare Diseases
Taruscio, Domenica
National Centre for Rare Diseases, Rome, National Institute of Health
Kosaki, Kenjiro
Keio University
Ahn, Younjhin
Korea NIH
Chae Jong Hee
Seoul National University Hospital
Cho Jae So
Seoul National University Hospital
Chong, Kun Cheon
Pusan National University Childrens Hospital in Yangsan
Kwon Yong Jin
Seoul National University Hospital
Lee Seungbok
Seoul National University Hospital
Moon Jangsup
Seoul National University Hospital
Park, Hyun-Young
Korea National Institute of Health
Alsafi Rasha
Ministry Of Health
Marafi Dana
Kuwait University
Traberg Rasa
Luhs Hospital Kauno Klinikos
Montserrat Moliner Antoni
Alan Maladies Rares Luxembourg
Thong Meow Keong
University Of Malaya
Landoure, Guida
Odontostomatologie, USTT
Calleja-agius Jean
Faculty Of Medicine And Surgery, University Of Malta
Vassallo Josanne
Division Of Endocrinology, Mater Dei Hospital & Molecular And Cellular Research Lab, Centre For Molecular Medicine And Biobanking, University Of malta
Adams David
Nih Undiagnosed Diseases Program
Gonzaga-Jauregui, Claudia
International Laboratory for Human Genome Research, LIIGH-UNAM
Moreno-salgado Rodrigo
Hospital Infantil De Mexico Federico Gomez
Schot Rachel
Erasmusmc, Rotterdam, The Netherlands, Department Of Clinical Genetics
Idris Muhammad Aminu
Ahmadu Bello University Teaching Hospital (Abuth), Zaria, Nigeria
Douzgou Houge Sofia
Department Of Medical Genetics, Haukeland University Hospital, Bergen, Norway
Houge Gunnar Douzgos
Haukeland University Hospital
Abdullah Uzma
Pmas-arid Agriculture University Rawalpindi
Akbar Fizza
Aga Khan University
Azam Maleeha
Comsats University Islamabad, Pakistan
Fatima Ambrin
Aga Khan University
Kakar Naseebullah
Department Of Biotechnology, Balochistan University Of Information Technology, Engineering And Management Sciences
Khan Saadullah
Department Of Biotechnology & Genetic Engineering, Kohat University Of Science And Technology, Kohat, Pakistan
Kirmani Salman
Aga Khan University, Karachi
Nasir Mahrukh
Aga Khan University Hospital
Waqas Ahmed
University Of Education
Khalaf-nazzal Reham
Arab American University
Cutiongco De La Paz, Eva Maria
Institute of Human Genetics, National Institute of Health, University of the Philippines, Manila
Azevedo Soares Celia
Centro Hospitalar Universitario Do Porto
Antonescu Madalina
The University of Medicine and Pharmacy Carol Davila, Center for Innovation and E-Health
Ciuca Andra
Babes-bolyai University, Romania
Craiu Dana
Pediatric Neurology Clinic, Alexandru Obregia Hospital Bucharest, University Of Medicine "Carol Davila", Bucharest, Romania
Plaiasu Vasilica
Insmc Alessandrescu-rusescu
Vuturar Romana
University Of Medicine And Phar,Acy From Cluj-napoca
Kashour Tarek
King Saud University Medical City
Khamis Modi
King Abdulaziz Medical City
Umair Muhammad
King Abdullah International Medical Research Center
Kavecan Ivana
Department Of Pediatrics, Faculty Of Medicine, University Of Novi Sad, Novi Sad, Serbia And Institutue For Children And Youth Health Care Of Vojvodina
Goh Jeannette
Genetics Service, Department Of Paediatrics, Kk Women'S And Children'S Hospital, Singapore
Jamuar, Saumya
Singhealth Duke-nus Genomic Medicine Centre
Malherbe Helen
Rare Diseases South Africa Npc
Moosa Shahida
Rare Disease Genomics In South Africa
Vorster Chris
North-west University
Kim Soo Yeon
Seoul National University Hospital
Lee Yun Jeong
Kyungpook National University Hospital
Barrero Nunez Maria Jose
Spainudp
Laurie Steven
Centro Nacional De Análisis Genómico (Cnag), Barcelona, Spain
Martinez-delgado Beatriz
Institute Of Health Carlos Iii (Isciii)
Palau Francesc
Sant Joan De Déu Children'S Hospital
Pons Rodriguez Montserrat
Son Espases University Hospital
Posada, Manuel
Institute of Rare Diseases Research
Pujol, Aurora
Neurometabolic Diseases Laboratory, Bellvitge Biomedical Research Institute (IDIBELL), Barcelona
Dissanayake, Vajira HW
Human Genetics Unit, Faculty of Medicine, University of Colombo
Hettiarachchi, Dineshani
Human Genetics Unit, Faculty of Medicine, University of Colombo
Cederroth Mikk
Wilhelm Foundation
Helene Cederroth
Wilhelm Foundation
Nordgren, Ann
Karolinska UDP, Karolinska University Hospital
Superti-Furga, Andrea
Lausanne University Hospital
Lee Ni-chung
National Taiwan University Hospital
Shotelersuk, Vorasuk
Chulalongkorn University, Bangkok
Sura Thanyachai
Medical Genetics And Genomics Association (Thailand)
Barakat Stefan
Department Of Clinical Genetics, Erasmus Mc University Medical Center, Rotterdam, The Netherlands
Marcelis, Carlo
Radboud University Medical Center, Nijmegen
Oei, Ling
Erasmus University Medical Center, Rotterdam
Van Zelst-Stams, Wendy AG
Department of Human Genetics, Radboud University Medical Center
Akgun Dogan Ozlem
Acibadem University
Alanay, Yasemin
Acibadem Mehmet Ali Aydinlar University
Anarbaeva Zhanara
Baskent University, Ankara, Turkey
Ceylaner, Serdar
Intergen Genetics Diagnosis and Research Center, Ankara University
Gencpinar Pinar
Izmir Biomedicine And Genome Center And Rareboost
Inal Gultekin Guldal
Istanbul Okan University
Ozen, Seza
Hacettepe University
Ozturk-hismi Burcu
Marmara University School Of Medicine, Department Of Pediatrics, Division Of Inherited Metabolic Disorders
Sonmez F.Mujgan
Ktu, Dept Of Child Neurology,Retired Lecturer , Trabzon Muscle And Nerve Disorders, Research And Application Center, Ankara, Turkey
Tufan Abdurrahman
Gazi University
El-hattab Ayman
Mena Organization For Rare Diseases
Babovic-Vuksanovic, Dusica
Mayo Clinic
Bodamer, Olaf
Harvard
Botto, Lorenzo
University of Utah
Chung Hyunglok Chung
Houston Methodist Research Institute
Ekker Stephen
Mayo Clinic
Gahl, William
National Institutes of Health, National Human Genome Research Institute
Groft, Stephen
National Center for Advancing Translational Sciences, National Institutes of Health
Klee, Eric
Mayo Clinic
Korf, Bruce
University of Alambama at Birmingham
Malicdan, May
Office of Clinical director, NIH Undiagnosed Diseases Program
McCray, Alexa
Harvard Medican School
Metz, Tim
Pacific Northwest National Laboratory
Meyn Stephen
University Of Wisconsin Center For Human Genomics And Precision Medicine
Morimoto Marie
National Institutes Of Health Undiagnosed Diseases Program
Nicoli Elena-raluca
Bethesda, Maryland
Partin, William Clyde
Emory Special Diagnostic Services Clinic-Emory University School of Medicine
Pearce, David A.
Sanford
Peng Xiao
Johns Hopkins University Dept Of Genetic Medicine
Phillips III, John A.
Division of Medical Genetics and Genomic Medicine, Vanderbilt University School of Medicine
Pinto E Vairo Filippo
Mayo Clinic
Puffenberge, Erik
The Clinic for Special Children
Schimmenti, Lisa
Mayo Clinic
Seavitt John
The Jackson Laboratories
Strauss, Kevin
The Clinic for Special Children
Sullivan, Kathleen
CHOP - Childrens Hospital of Philadelphia
Tiff Cynthia
Nih Undiagnosed Diseases Program
Yamamoto, Shinya
Baylor College of Medicine
Duckers Jamie
Cardiff And Vale Uhb
Shortland Graham
Cardiff And Vale Uhb
Tully Ian
All Wales Medical Genomics Service