International MPS Day | May 15
It's About Time
The Right Time Is Now
International MPS Day | May 15
It's About Time
The Right Time Is Now
Every delay changes a life.
Early Diagnosis
When MPS is identified early, it opens the door to timely care, informed decisions, and better outcomes. Families can access the right specialists sooner, begin treatment earlier, and plan for the future with greater clarity and support. Early diagnosis doesn’t just change a timeline—it changes what’s possible.
Watch this vidow with Dr. Maria Fuller speaking about the benefits of early diagnosis.
Delayed Diagnosis
When diagnosis is delayed, critical time is lost—time that cannot be recovered. Families often face years of uncertainty, misdiagnoses, and unanswered questions while the disease continues to progress. By the time answers come, opportunities for early intervention may have already passed, impacting both quality of life and long-term outcomes.
Watch this video with Dr. Robergerto Giguliani speaking about the problems with late diagnosis.
MPS Awareness Webinar
MPS Without Borders: Global Awareness, Innovation, and Access to Care
This MPS Awareness Month, the International MPS Network (IMPSN) and MetabERN invite patients, families, advocates, healthcare professionals, researchers, and the global rare disease community to join an important international conversation focused on the future of MPS care around the world.
MPS Without Borders is a live global webinar bringing together leading MPS experts from India, Latin America, Canada, and Europe to discuss:
- The real-world challenges families face accessing diagnosis and multidisciplinary care
- Global disparities in healthcare systems and treatment access
- Innovation, emerging therapies, and future hope
- International collaboration and shared solutions
- How scientific progress can reach every patient — regardless of geography
More than a scientific webinar, this event is a global discussion about equity, collaboration, and improving the future of care for individuals and families living with MPS worldwide.
Save the Date
May 22, 2026 08:00 PDT | 11:00 EDT | 15:00 CEST
Virtual International Webinar Hosted by IMPSN & MetabERN
Prof. Yoshikatsu Eto ( Director, Advanced Clinical Research Center)
"Early and decisive intervention is critical for achieving better outcomes. To accomplish this, newborn screening (NBS) for MPS is essential.
Shining a Light on Diagnosis and Hope
As part of last year’s MPS Day campaign, we shared two powerful videos featuring Canadian families—one impacted by early diagnosis through Ontario’s Newborn Screening Program, and another facing a much later diagnosis.
Their stories are a powerful reminder that time matters, and that early diagnosis can change lives.
Watch the videos below:
Global Experts. One Shared Mission.
Hear directly from global experts as they share why MPS Awareness Day matters—and why early diagnosis, timely treatment, and equitable care are critical for every patient.
What is MPS?
Mucopolysaccharidoses (MPS) are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes. The missing or insufficient enzyme prevents cells from recycling waste, resulting in the storage of materials in cells throughout the body. As the disease progresses, there is widespread damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system, leading to a shortened lifespan.
The Numbers Behind MPS
Understanding the reality—one life at a time
1 in 25,000
children are born with an MPS condition
1 in 5,000
babies are born with a lysosomal storage disorder
7 types
of MPS have been identified worldwide
50+ countries
are part of the global MPS community through IMPSN
Prof. Maurizio Scarpa (Director, Regional Coordinating)
"Every moment counts! —timely diagnosis, equitable access to treatment, and dedicated research are a must and need to be sustained to really transform lives."
Join the Movement:
It’s About Time for MPS
Take action today. Share the campaign, become a partner of the IMPSN, donate, and stand with the global MPS community. Together, we can raise awareness, demand equity in care, and accelerate research for a better future.