MSD Awareness Day: Honoring Families and Advocates Facing Rare Disease Challenges
July 30th marks Multiple Sulfatase Deficiency (MSD) Awareness Day, a time to recognize the children and families affected by this extremely rare and life-limiting genetic disorder. With fewer than 200 documented cases worldwide, MSD is classified as an ultra-rare disease, often misdiagnosed or misunderstood. On this day, we stand in solidarity with the global community raising awareness, advocating for research, and supporting those who live with the effects of MSD every single day.
What Is Multiple Sulfatase Deficiency (MSD)?
MSD is a lysosomal storage disorder caused by a genetic mutation that disrupts the function of multiple enzymes, leading to the progressive degeneration of multiple body systems. Symptoms often include developmental delays, mobility impairments, seizures, hearing loss, and respiratory complications. Most children are diagnosed in infancy or early childhood, and the condition is both progressive and terminal.
Because MSD affects many functions of the body—including the brain, muscles, skin, and bones—families must quickly adapt to new realities: navigating mobility challenges, seeking specialized care, and making the most of every moment.
Why MSD Awareness Matters
Raising awareness for rare diseases like MSD is essential for:
Increasing early diagnosis through improved understanding
Expanding research funding and clinical trials
Connecting families with supportive communities and resources
Recognizing the resilience of caregivers and siblings impacted by this journey
Awareness also reduces isolation. For many MSD families, the rare nature of the condition means few (if any) local support systems exist. By sharing stories and educational content, we remind these families: You are not alone.
Ways to Honor MSD Awareness Day
Even if you’ve never heard of MSD until today, there are meaningful ways to support this cause:
Learn and Share:
Follow advocacy organizations like MSD Action Foundation to learn more and share posts with your community.Light Up in Orange:
Join the international movement by wearing or displaying the color orange on July 30 to honor MSD warriors.Support Rare Disease Research:
Contribute to MSD research initiatives or support nonprofits that fund rare disease studies.Acknowledge the Caregivers:
Parents of children with MSD face a unique emotional and physical caregiving load. A message of encouragement goes a long way.
Standing With Families
At OnMyOwn Solutions, we believe that visibility fuels compassion. We join the rare disease community in lifting up the voices of MSD families this July 30—and every day. Whether you're a medical provider, friend, or fellow parent, take a moment to learn more, share a story, or simply say: We see you. We support you.
📘 Explore more tools and stories for families living with rare and disabling conditions:
Dress independently with MyLEDA.
Get 120+ tips and tricks on how to live independently in Solutions for Living Life Well With a Disability.
Download our free e-book sample →