Latest News
Keep up with what’s happening in the MPS community, industry and research.
News Feed
News from the MPS Community, industry and research.
To view posts by category, click on your chosen category which appears after the date in any of the posts.
A Guide to Help Siblings Cope
Courageous Parent Network has published a guide Communicating Effectively and Compassionately to Help Siblings Cope.
Quebec Is the First In Canada to Develop a New Rare Disease Policy
The Canadian MPS Society welcomes the news that the Government of Quebec has unveiled its policy for rare diseases…
Promising News For Sanfilippo (MPS IIIA) Treatment
Lysogene has just provided promising data from their clinical trials for the efficacy of Gene Therapy LYS-SAF302 in the treatment of MPS IIIA.
What’s Morquio? By Titus Aged 3
Titus and his family have made a series of videos to show what it’s like to grow up with Morquio (MPS IV).
“Our Voices” Podcast: Saving Ryan
Saving Ryan is the inspiring story by physician-scientist Dr. Emil Kakkis about his journey to develop a new, first-ever treatment for MPS.
Discontinued TAK-609 Clinical Trial for MPS II
The Canadian MPS Society met directly with Takeda Pharmaceuticals on May 11th, when Takeda shared with us that they will discontinue development of...
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,...
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...
NICE Recommends Vimizim For Treating MPS IVA Morquio
We are excited to hear that Elosulfase alfa - branded as Vimizin and made by BioMarin - has been recommended by NICE (National Institute for...
Recruiting for Clinical Trial: MPS-II (Hunter Syndrome) with Pabinafusp-Alfa
Mathias Schmidt, PhD, President and CEO of JCR Pharmaceuticals USA, discusses long-term efficacy and safety data of pabinafusp-alfa (Izcargo) in...