Patients’ Voices

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

September shines a light on Mitochondrial Disease Awareness and Pain Awareness Month. Mitochondrial diseases impact around 1 in 5,000 individuals and often remain underdiagnosed and misunderstood. In recognition of Mitochondrial Disease Awareness Week (September 15–21) and Pain Awareness Month, we celebrate resilience by sharing an inspiring patient story alongside an expert-led presentation focused on chronic pain

On the last day of February of every year, the international, patient-led awareness campaign organised by EURORDIS brings together millions of people worldwide in solidarity with the rare disease community. This year, the MetabERN patient group shared their stories and experiences in a video message aimed at expressing support for Rare Disease Day 2024 and raising awareness of rare metabolic diseases.