by adminmps | Jun 30, 2022 | News, Resources
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...
by adminmps | Jun 30, 2022 | News, Resources
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...
by adminmps | Jun 17, 2022 | News, Resources
Titus and his family have made a series of videos to show what it’s like to grow up with Morquio (MPS IV). Find out more about Morquio Syndrome...
by adminmps | Jun 17, 2022 | News, Resources
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...
by adminmps | Apr 29, 2022 | News, Resources
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...
by adminmps | Apr 29, 2022 | News, Resources
Ultragenyx has relaunched their patient support interactive website, UltraRareAdvocacy.com with a refreshed design and more ways to connect with rare disease communities. Visitors will find: More rare experiences from individuals and families living with...
