The last day of February is International Rare Disease Day. It’s the day to raise awareness about rare diseases worldwide!
A rare disease affects no more than 5 people in each 10 000 individuals.
Debates about research in Rare Diseases and Rare Disease Policies are taking place today all over the world. You can also join! Find out here the closest event happening near you.
If you can’t, why not take a few minutes to sign a petition?
The Blackswan Foundation is promoting a petition for increased awareness of research in rare diseases.
Don’t forget, each of the 5000+ rare diseases is rare, but the patients are numerous!
You can sign it here.
As debates take place, it’s always good to keep up-to-date on what is being done.
The European Policy Landscape in Rare Diseases is still dispersed, with France being the number 1 country in the World establishing a National Plan for Rare Diseases (‘Plan National pour Maladies Rares‘). You can get further information on the topic in this 2015 article “Rare disease policies to improve care for patients in Europe”, by Charlotte Rodwell and Segolene Ayme.
“This is no time for apathy or complacency. This is a time for vigorous and positive action”
Dr. Martin Luther King