Latest News
Keep up with what’s happening in the MPS community, industry and research.
**All Interesting Articles will get posted here with a link to download.
THIS JUST IN – NEW ARTICLE – Posted February 19, 2026
Compassion in Action: Simple, Creative Ways to Support a Loved One with a Chronic Condition
Written by: Jennifer McGregor, Public Health Library. (CLICK ON THE TITLE FOR FULL ARTICLE).
Living with a chronic condition reshapes daily life — not just for the individual but for everyone around them. Support, when done thoughtfully, can bring lightness, stability, and even humour into moments that might otherwise feel heavy. Let’s explore creative, compassionate, and practical ways to walk beside someone navigating long-term health challenges.
Quick Summary
Support means more than help — it’s about dignity, adaptability, and small acts that restore agency. Listen first. Simplify logistics. Encourage joy. Build systems that ease the daily load.
Being There Without Taking Over
Every chronic condition brings a rhythm of flare-ups and calm. The key is to match your pace to theirs — not to fix, but to synchronize.
- Listen without correction. Sometimes, empathy means silence.
- Offer choice, not pressure. “Would you like company today?” lands better than “You need to get out more.”
- Respect energy cycles. Some days will be “window days,” others “recovery days.” Both deserve recognition.
CLICK ON THE ARTICLE TITLE TO READ THE ENTIRE PIECE.
News Feed
News from the MPS Community, industry and research.
A Guided Pathway to the Clinical Trials Process
Courageous Parents Network has a Guided Pathway designed to present families with a clear-eyed picture of the clinical trials process, through the...
What’s On Your Summer Reading List?
A list of books for children to teach them how everyone is unique how to turn feelings of sadness, anger and fear into happiness and how to find kindness and positives in each day.
Rare Revolution’s Magazine on Long-Term Caregiving
Rare Revolution’s online magazine. This edition recognises the unrelenting mental and physical strains of caregiving.
Mental Health Education Webinar Series
The Rare Disease Foundation has published five helpful videos on their YouTube channel from their recent Mental Health Webinar.
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...