MSI Press Blog

  Zhenya Yanovich If you live in the spina bifida world, it probably doesn’t feel rare at all. When it’s part of your daily life, your community, your routines — it feels everywhere. But statistically, spina bifida is classified as a rare disease , affecting about 1 in 2,700 births in the U.S. , and fewer in many other parts of the world. That disconnect — between lived experience and public awareness — matters. Spina bifida is a neural tube defect that occurs during early pregnancy, when the spine and spinal cord don’t fully form. It’s a lifelong condition, and like many rare diseases, no two experiences are the same . Some individuals walk independently; others use wheelchairs. Some have minimal medical needs; others require complex, ongoing care. Access to knowledgeable care can be a major challenge — especially outside major medical centers. Families in rural or remote areas may struggle to find providers experienced in spina bifida across adulthood, not just pediatrics....

  Neela Even many medical professionals may only see it once — if ever. OEIS complex is an extremely rare congenital condition , estimated to occur in about 1 in 200,000–400,000 births . The name OEIS comes from the four main features present at birth: Omphalocele, Exstrophy of the cloaca, Imperforate anus, and Spinal defects . It is complex, life-altering, and requires highly specialized medical care from day one. Because OEIS is so rare, finding experienced medical teams is a major challenge . Families often must deliver at or relocate to major tertiary hospitals. For those living in rural or remote areas , access to ongoing care can mean constant travel, long separations from home, and limited access to knowledgeable providers, therapists, or trained caregivers once they return home. OEIS is not a “one-time fix.” Across a lifetime, individuals with OEIS may face: Multiple, staged surgeries beginning in infancy Long-term bowel and bladder management needs Mobility c...

Most people haven’t heard of CHARGE Syndrome (including doctors who say, "This is my first patient with CHARGE")— and that’s part of the challenge. CHARGE syndrome is a rare genetic condition , affecting roughly 1 in 10,000 births . It’s complex, lifelong, and looks different for every person who has it. The name CHARGE comes from a pattern of medical features that can include differences in the heart, hearing, vision, breathing, growth, balance, and development . Because CHARGE is so rare, finding knowledgeable medical support can be incredibly hard — especially for families living in rural or remote areas . Many parents spend years educating doctors, coordinating dozens of specialists, and traveling long distances just to access basic care. Finding trained caregivers, therapists, or educators who truly understand CHARGE can feel nearly impossible. And CHARGE doesn’t end with childhood. Across a lifetime, individuals with CHARGE may face: Multiple surgeries and ong...