This month Rare Revolution’s online magazine recognises the unrelenting mental and physical strains of caregiving, and how essential it is that caregivers are provided with more emotional, physical and financial support to show that they are valued and appreciated. A...
The Rare Disease Foundation has published five helpful videos on their YouTube channel from their recent Mental Health Webinar. Subjects include: 1. Creating relational bonds with your children and understanding healthy relationships 2. Working through anxiety and...
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...
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 has been strongly advocating to add MPS I-H (Hurler Syndrome) to all newborn screening panels throughout Canada. To date, MPS I-H has been added to the Ontario Newborn Screening Panel, with the strong advocacy efforts of Newborn Screening...
