International MPS Awareness Day

International MPS Awareness Day is observed every year on May 15. This day focuses on mucopolysaccharidosis (MPS) and mucolipidosis (ML), which are rare genetic lysosomal storage disorders that affect thousands of people worldwide. The observance aims to educate the public about the challenges faced by families living with these progressive conditions and to advocate for improved diagnostic tools and treatments.

See also: Rare Disease Day, Cornelia De Lange Syndrome Awareness Day, National Kabuki Syndrome Awareness Day

History of International MPS Awareness Day

The medical understanding of these disorders began in the early 20th century. In 1917, Dr. Charles Hunter described a clinical condition involving skeletal abnormalities and organ enlargement, now known as MPS II or Hunter syndrome. Shortly after, in 1919, pediatrician Gertrud Hurler identified a similar set of symptoms in other patients, which became known as MPS I or Hurler syndrome. For several decades, medical professionals categorized these as separate entities until researchers in the late 1960s discovered they were caused by specific enzyme deficiencies that prevent the body from breaking down complex sugars. ¹

Advocacy groups established the official awareness day in 2006 to create a global platform for patients and their families. Organizations like the National MPS Society recognized that because these diseases are rare, they often receive less funding and attention than more common conditions. By choosing May 15 as a dedicated date, advocates sought to harmonize international efforts to support newborn screening and clinical trials for enzyme replacement therapies. Over the years, the day has expanded to include participation from medical institutions and government agencies around the world.

Why is International MPS Awareness Day important?

MPS and ML are caused by the absence or malfunction of specific enzymes needed to clear cellular waste. When this waste builds up, it causes permanent damage to the heart, bones, joints, and nervous system. Because many early symptoms—such as frequent ear infections or joint stiffness—mimic common childhood ailments, patients are often misdiagnosed for years. Raising awareness helps clinicians and parents recognize the signs earlier, which is critical because some treatments are most effective when started in infancy.

This observance also emphasizes the ongoing need for medical research and legislative support for rare diseases. While treatments like bone marrow transplants and enzyme infusions exist for some types of MPS, others still have no approved therapies. The day serves as a vital networking opportunity for families to share information and resources, reducing the isolation that often comes with a rare diagnosis. It highlights the progress made in gene therapy and the importance of including MPS in standard newborn screening panels across all regions.

• It encourages early diagnosis to prevent irreversible organ and tissue damage.
• The day promotes funding for research into life-extending medical treatments.
• It unites families and caregivers into a supportive global community.
• Advocates use the day to lobby for universal newborn screening programs.
• It educates the general public about the realities of living with a rare genetic disorder.

How to Observe International MPS Awareness Day

The most recognizable way to participate is by wearing purple, the official color of MPS awareness. This simple act shows solidarity with patients and often prompts questions that allow for education about the disease. Many people also use digital platforms to share facts about the different types of MPS, helping to spread knowledge to those who may have never heard of the condition. Sharing personal stories or infographics can help put a human face on the statistics of rare diseases.

Communities often organize local events such as “Chase the Solutions” walks or educational seminars featuring genetic specialists. Some families choose to light up their homes or local landmarks with purple lights on the evening of May 15 to draw attention to the cause. For those who want to make a direct impact, donating to research foundations helps fund the clinical trials necessary for developing new therapies. Engaging with local schools or workplaces to provide brief educational materials can also foster a more inclusive environment for affected individuals.

• Wear a purple shirt or accessory to show your support for the community.
• Share a verified fact or video about MPS on your social media profiles.
• Donate to a non-profit organization dedicated to finding a cure for MPS.
• Participate in a local awareness walk or virtual fundraising event.
• Light a purple candle or use purple outdoor lighting to honor those affected.

International MPS Awareness Day Dates Table

1. https://mpssociety.org.uk/how-you-can-help/mps-awareness-week[↩]