Why we need you to show your stripes on Rare Disease Day 2026

The theme for Rare Disease Day 2026 (February 28th) is “Equity.” This campaign calls for fair access to diagnosis, treatment and social opportunities  because rare should never mean overlooked.

Living with Prader-Willi Syndrome means needing structure, supervision and predictability in a world that often values independence and spontaneity above all else. It means planning every day. It means families and individuals working tirelessly to manage hunger, routines, emotions and wellbeing – not occasionally, but every single day.

Equity means recognising these realities and responding with action.

Equity means the right support at the right time so people with PWS can live safe, meaningful and happy lives.

In our pictures, we imagine a world for a person with PWS where there is equity through all stages of life, from newborn to adulthood.

Supports are a recognised need, not a luxury. 

#RareDiseaseDay #Equity #PWSAwareness

It’s called Rare Disease Day (rather than Rare Condition Day) because ‘rare disease’ is the official term used in healthcare policy, research and advocacy.