Please note: If the survey appears in a language different from your selection due to default browser settings or by mistake, please use the language toggle button located at the bottom right-hand corner to switch to your preferred language.
Veuillez noter : Si le sondage apparaît dans une langue différente de votre sélection en raison des paramètres par défaut de votre navigateur ou par erreur, veuillez utiliser le bouton de changement de langue situé dans le coin inférieur droit pour passer à votre langue préférée.
Thank you for participating in this
survey.
The purpose of this survey is to better understand the financial costs associated with living with or caring for someone with a lysosomal storage disorder in Canada.
Lysosomal storage disorders include:
- Niemann-Pick Disease Type C
- Acid Sphingomyelinase Deficiency
- Fabry Disease
- Pompe Disease
- Gaucher Disease
- Cystinosis
- Lysosomal Acid Lipase Deficiency
- Batten Disease
- MPS I – Hurler Syndrome
- MPS II – Hunter Syndrome
- MPS III – Sanfilippo Syndrome
- MPS IVA – Morquio A Syndrome
- MPS VI – Maroteaux-Lamy Syndrome
- MPS VII – Sly Syndrome
- Metachromatic Leukodystrophy
Your responses will help improve understanding of the financial challenges faced by Canadians living with lysosomal storage disorders and will help inform discussions about future financial assistance and support programs.
The survey should take approximately 10–15 minutes to complete.
Your responses will remain
anonymous and confidential and will only be reported in combination with those of other participants. This survey is being conducted by Abacus Data, an independent Canadian research firm on behalf of a not-for-profit financial assistance organization in collaboration with the Canadian Fabry Association, the Canadian Association of Pompe, the Canadian MPS Society, and the National Gaucher Foundation of Canada.
Please note: If you need additional time to gather information, you can save your responses and return later by selecting the "Save and Continue Later" option located in the bottom right corner of the survey.