Model Consent Clauses for Rare Disease Research Contributors


We would like to acknowledge the following community members for contributing to this initiative:

  • Jack Goldblatt, University of Western Australia, Perth, Australia
  • Rosario Isasi, Institute for Bioethics and Health Policy, University of Miami, Miami, USA
  • Petra Kaufmann, AveXis, Chicago, USA
  • Bartha Knoppers, Center of Genomics and Policy, McGill University, Montreal, Canada
  • Fruzsina Molnar Gabor, Heidelberg Academy of Sciences and Humanities, Heidelberg, Germany
  • Minh Thu Nguyen, Center of Genomics and Policy, McGill University, Montreal, Canada
  • Laetitia Ouillade, AFM-Téléthon, Evry, France
  • Eric Sid, National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, USA
  • Mahsa Shabani, University of Leuven, Leuven, Belgium
  • Anne-Marie Tassé, Center of Genomics and Policy, McGill University, Montreal, Canada
  • Durhane Wong-Rieger, Canadian Organization for Rare Disorders, Toronto, Canada