Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.
By Sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.
Min gamle hjemmeside, efter diagnose med kronisk intestinal pseudo obstruktion og gastroparese. (Opdatering ikke længere mulig.)
https://intestinalpseudoobstruction.page.tl/Hjem-Home.htm
Min ‘nye’ hjemmeside med fokus på at være kronisk levende, istedet for kronisk syg.
https://kronisklevende.art
Kronisk levende 