MSI Press Blog

  When all the kids were little, there was no lifeline. No safety net. No calm voice on the other end of a phone to help us sort out panic from emergency. If we called the ER, the answer was always the same, delivered in that flat, policy‑driven tone that never once considered the reality of our household: “We can’t dispense medical advice over the phone. You’ll need to bring the child in.” As if “bringing the child in” were as simple as grabbing a purse and car keys. As if we didn’t have three other children at home—one medically fragile, one medically complex, and one who was still learning to tie her shoes but was already being drafted into the role of second mama. So when Doah stopped breathing, or Noelle’s shunt failed, or someone spiked a fever that didn’t look like a normal fever, off we went. Donnie driving. Me in the back seat, doing whatever triage was required. And Lizzie—regardless of age—gathering the others, settling them, babysitting with a competence that grew far t...

  So… what  is  a rare disease? A disease is considered  rare  when it affects a small percentage of the population — often  fewer than 1 in 2,000 people . But here’s the twist: while each condition is rare on its own,  rare diseases are common collectively . More than  300 million people worldwide  live with one of over  7,000 known rare diseases . Rare doesn’t mean simple. Many rare diseases are: Genetic and lifelong Diagnosed late — or misdiagnosed for years Poorly researched or underfunded Lacking clear treatment pathways or cures And the challenges go far beyond medicine. People and families affected by rare disease often face: Difficulty finding knowledgeable doctors and specialists Long travel distances for care, especially in rural or remote areas Fragmented services and gaps in adult care Financial strain from medical costs and lost income Social isolation and misunderstanding Emotional burnout for individuals, parents, siblings...