Patients’ Voices

My name is Eirini and I live in Greece. At a young age, I was diagnosed with an ultrarare inherited metabolic disorder called Mucopolysacharidosis type IVB (MPS IVB) or Morquio type B. My story begins in 2003 at the age of 5, when the first mild symptoms appeared. Although I was very young, I remember experiencing

Hello there! I’m Konstantinos, I’m twenty-two and I’m majoring in Physics. I live with a rare disease called Cystinosis since… well, since I can remember myself really. It all started when I was about one and couldn’t stand without support, whilst other children my age were already running around giving their parents headaches. My parents young

For Rare Disease Day 2026, Nataliya Foundation answers “What is rare in rare?” with three words: Treatment, Accessibility, Equality.

For Rare Disease Day 2026, Krikos Zois answers “What is rare in rare?” with three words: Awareness, Advocacy, Accessibility.

For Rare Disease Day 2026, AFG answers “What is rare in rare?” with three words: Heterogeneity, Complexity, Uncertainty.

For Rare Disease Day 2026, The Lily Foundation answers “What is rare in rare?” with six words reflecting challenges and strengths.

For Rare Disease Day 2026, AEEG answers “What is rare in rare?” with three words: Special, Challenging, Resilience.

For Rare Disease Day 2026, JMR Foundation answers “What is rare in rare?” with three words: Expertise, Experience, Inventions.

For Rare Disease Day 2026, LAL-D Patient Organization answers “What is rare in rare?” with three words: Resilience, Hope, Unity.

For Rare Disease Day 2026, MEPAN Foundation answers “What is rare in rare?” with three words: Rest, Satisfaction, Stability.

For Rare Disease Day 2026, Menkes International Association answers “What is rare in rare?” with three words: Fairness, Treatment, Certainty.

What happens when your body is under siege, but the world can’t see the battle?Living with Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-like episodes (MELAS) syndrome means navigating a rare, often invisible disease that reshapes every aspect of life. This Global Mental Health Day (October 10), we’re honoured to share a patient’s story in a new