47992 visitors
About Us
We have created this website to bring people who are affected and involved with Morquio B (MPS IV B) together so that they may form contacts, share information, and help us in finding a treatment for this rare disease.
It is our goal to raise funds for research and develop a better understanding of this disease. It is our hope that this research will lead to a treatment.
The new Morquio B/Late on-set GM1 Patient Survey is now complete! If you or your child has been diagnosed with either of these conditions please take the time to complete this survey. It will mean better care for all of us.
Please click on the “Medical Advisory Board” tab to the left to view the survey in 8 different languages.
Visit www.morquiob.org to find out more information about research and to view the Medical Registry for Morquio B.
If you wish to be a part of our efforts, let us know how we can contact you. Together we will find a treatment.
An inspirational speech by Arthur, an adult living with Morquio B, at our Second Annual Gala Fundraiser “An Evening in Italy”
News
Published results from Patient Survey August 10, 2018
Thank you to all who participated!
2018 UBC Impact Report July 4, 2018
Our current UBC Impact Report is here! Visit the Medical Advisory Board page and select the 2017-2018 UBC Impact Report to read about the great progress that Dr. Stockler and her team have made.
CALL FOR HELP: Morquio B Community in Europe April 3, 2018
Dr. Stockler is ready to move forward with further studies for Morquio B. She has asked that I request all patients affected with Morquio B in Europe to contact her team or message me. In order to establish a study site in this area, she needs to know the City that you live in and the Medical Centre most responsible for your care. Our projects are only as successful as the participation of every Morquio B patient. Please take the time to message us.