Patient organisations in Jordan first celebrated Rare Disease Day in 2014. It is hoped the event will grow each year to inform and raise awareness of rare diseases in the country.
The occasion of Rare Disease Day 2020 was marked in Jordan by disseminating photo frames and brochures to raise awareness as well as creating ‘rare’ bracelets. Free genetic counselling for patients and daily Facebook posts about Rare Disease facts also took place.
Do you know of any events not listed here? Or would you like to get involved? Email us at [email protected].
Events
Rare Disease Day
On Rare Disease Day we will make the exciting announcement of our SMA research project! We hope to help to… Continue reading Rare Disease Day