It’s : About : Time
To Unite for MPS Fight for MPS Shine a Light for MPS
INTERNATIONAL MPS DAY: MAY 15, 2025
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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.
It’s About Time to Fight for MPS
Around the world, individuals living with MPS face delayed diagnoses, limited treatment options, and unequal access to care. It’s time to change that. Through bold advocacy and investment in research, we are pushing for earlier detection, better therapies, and stronger policies that support patients and families at every stage of life. Together—with patients, scientists, clinicians, and allies—we’re building a future where no one is left behind. The fight for MPS is urgent, and it starts with raising our voices now.
"I live on my own clock. MPS doesn’t wind it."
"Time may bring challenges with MPS, but my dreams remain limitless."
"It’s about time" means that every day without a medication, without a cure, is a day of missed opportunities."
"It’s About Time. Because time is LIFE."
"It’s about time people realized that MPS isn’t just about what we lose, it’s about the time we still have and how we make the most of it."
"I want to emphasize how critical time is in the journey of living with alpha-mannosidosis."
"Every moment counts! —timely diagnosis, equitable access to treatment, and dedicated research are a must and need to be sustained to really transform lives."
Prof. Maurizio Scarpa
Director, Regional Coordinating
It’s About Time to Unite for MPS
No matter where we live, MPS impacts us all. From families and caregivers to clinicians, researchers, and advocates—our strength lies in our unity. By coming together across borders, cultures, and systems, we can accelerate change and ensure every person affected by MPS is seen, heard, and supported. Now is the time to break down silos, share knowledge, and lift each other up. Because when we unite, we create a global force for awareness, equity, and hope.
"Early diagnosis of MPS is not just critical—it’s life-changing."
Dr. med. Christina Lampe
Senior Physician
It’s About Time to Shine a Light for MPS
It’s about time the world saw MPS for what it is—a global health issue that deserves urgent attention, understanding, and action. By shining a light on MPS, we raise critical awareness about the challenges faced by those living with these rare diseases. But awareness alone isn’t enough. We must turn that awareness into meaningful change—ensuring that all individuals, regardless of where they live, have access to timely diagnoses, effective treatments, and compassionate care. It’s about equality. It’s about equity. And most of all, it’s about giving every person affected by MPS the visibility and voice they have always deserved.
"Early and decisive intervention is critical for achieving better outcomes. To accomplish this, newborn screening (NBS) for MPS is essential."
Prof. Yoshikatsu Eto
Director, Advanced Clinical Research Center
