New Born Screening #NBS4MPS

New Born Screening #NBS4MPS

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...
Connect With Rare Disease Communities!

Connect With Rare Disease Communities!

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...
Resources for Courageous Parents

Resources for Courageous Parents

Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. They have videos, podcasts, printable guides, Guided Pathways, and a blog to help...