Courageous Parent Network has published a guide Communicating Effectively and Compassionately to Help Siblings Cope. It is written by a psychologist and grief counselor and includes tips from fellow parents. “From the time that their sibling is diagnosed with a...
The Canadian MPS Society welcomes the news that the Government of Quebec has unveiled its policy for rare diseases which affect approximately 700,000 people in the province in order to improve the accessibility of health care and services adapted to the needs of...
Lysogene has just provided promising data from their clinical trials for the efficacy of Gene Therapy LYS-SAF302 in the treatment of MPS IIIA. Read Press Release >
Saving Ryan is the inspiring story by physician-scientist Dr. Emil Kakkis about his journey to develop a new, first-ever treatment for MPS. Hear about the great challenges getting grant and industry support for this rare disease despite the solid science behind doing...
The Canadian MPS Society met directly with Takeda Pharmaceuticals on May 11th, when Takeda shared with us that they will discontinue development of TAK-609, investigational intrathecal enzyme replacement therapy for MPS II, Hunter syndrome. Patients with MPS II...
