Understanding patient and parent/caregiver perceptions on gene therapy in Gaucher disease: an international survey

por Collin-Histed, Tanya, Rosenberg, Aviva, Hopman, Noortje, Pacey, Jessica
Publicado 2023

Measuring disease activity and patient experience remotely using wearable technology and a mobile phone app: outcomes from a pilot study in Gaucher disease

por Donald, Aimee, Cizer, Huseyin, Finnegan, Niamh, Collin-Histed, Tanya, Hughes, Derralynn A., Davies, Elin Haf
Publicado 2019

A global neuronopathic gaucher disease registry (GARDIAN): a patient-led initiative

por Collin-Histed, Tanya, Stoodley, Madeline, Beusterien, Kathleen, Elstein, Deborah, Jaffe, Dena H., Revel-Vilk, Shoshana, Davies, Elin Haf
Publicado 2023

The European Gaucher Alliance: a survey of member patient organisations’ activities, healthcare environments and concerns

por Žnidar, Irena, Collin-Histed, Tanya, Niemeyer, Pascal, Parkkinen, Johanna, Lauridsen, Anne-Grethe, Zariņa, Sandra, Cohen, Yossi, Manuel, Jeremy
Publicado 2014

A charitable access program for patients with lysosomal storage disorders in underserved communities worldwide

por Mehta, Atul, Ramaswami, Uma, Muenzer, Joseph, Giugliani, Roberto, Ullrich, Kurt, Collin-Histed, Tanya, Panahloo, Zoya, Wellhoefer, Hartmann, Frader, Joel
Publicado 2021

Transformative effect of a Humanitarian Program for individuals affected by rare diseases: building support systems and creating local expertise

por Verma, I. C., El-Beshlawy, A., Tylki-Szymańska, A., Martins, A., Duan, Y.-L., Collin-Histed, T., van der Linde, M. Schoneveld, Mansour, R., Dũng, V. C., Mistry, Pramod K.
Publicado 2022

The definition of neuronopathic Gaucher disease

por Schiffmann, Raphael, Sevigny, Jeff, Rolfs, Arndt, Davies, Elin Haf, Goker‐Alpan, Ozlem, Abdelwahab, Magy, Vellodi, Ashok, Mengel, Eugen, Lukina, Elena, Yoo, Han‐Wook, Collin‐Histed, Tanya, Narita, Aya, Dinur, Tama, Revel‐Vilk, Shoshana, Arkadir, David, Szer, Jeff, Wajnrajch, Michael, Ramaswami, Uma, Sidransky, Ellen, Donald, Aimee, Zimran, Ari
Publicado 2020