Medical Advisory Board
All funds raised through The Priest Family Fund for Morquio B are used to support research for The MorquioBetter Team lead by Dr. Sylvia Stockler; Professor and Head of the Division of Biochemical Diseases in the UBC Department of Pediatrics and Program Director of Biochemical Diseases at BC Children’s Hospital.
Through the first MorquioBetter project, Dr. Stockler and her team have developed and launched the only worldwide patient registry for Morquio B: www.morquiob.org
UBC creates an Impact Report yearly to outline our continued fundraising and research achievements. Please view these reports to find out more about our Medical Advisory Board – The MorquioBetter Team and the progress that they have made.
A patient registry is now available for everyone who has Morquio B or Late on-set GM1.
If you are affected with this condition or are a caregiver of someone who is affected, please take the time to fill this out. The surveys must be completed as soon as possible as the data will be analyzed shortly.
Your input will prove that there are more affected individuals worldwide than originally predicted. The surveys will be analyzed only by our researchers in order to find out more about these conditions. These findings aim to not only aid in improving medical interventions (orthopedic treatments etc.), but move us closer to developing a treatment.
The patient survey is available in several different languages and is completely confidential.
When you click on a link below you will be transferred to a secure site that only medical professionals from the MorquioBetter Team will be able to view.
Dutch – [https://neurodevnet.med.ualberta.ca/surveys/?s=CR3EKLEET3]
English – [https://neurodevnet.med.ualberta.ca/surveys/?s=K99PHPMN78 ]
French – [https://neurodevnet.med.
German – [https://neurodevnet.med.
Spanish- [https://neurodevnet.med.ualberta.ca/surveys/?s=KYX9LA7739 ]