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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.

Because every delay changes a life.      ✔
Because where you live should not determine your future.      ✔
Because early action changes outcomes.      ✔
Because earlier diagnosis means better outcomes.      ✔
Because every delay changes a life.      ✔
Because where you live should not determine your future.      ✔
Because early action changes outcomes.      ✔
Because earlier diagnosis means better outcomes.      ✔

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.

Voices From Around the World

As part of the International MPS Network’s 2026 It’s About Time campaign, IMPSN Board members from around the globe have come together to share powerful messages of hope, urgency, and solidarity for the MPS community. These videos reflect the collective voices of leaders, advocates, and organizations united by one belief: when it comes to diagnosis, treatment, care, research, and support for individuals living with MPS, the right time is NOW.

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:

Michal Inbar-Feigenberg (Section Head, Metabolic Genetics)

"Early diagnosis leads to better outcomes. Timely identification and treatment of presymptomatic or early symptomatic patients are essential, particularly as new therapies are investigated in clinical trials targeting the CNS manifestations of MPSs."

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.

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.