Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and caregivers.
What is rare disease day?
Rare Disease Day is the official international awareness-raising campaign for rare diseases which takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Rare Disease Day was launched by EURORDISR are Diseases Europe and its Council of National Alliances in 2008.
How to show your support for rare disease day
Raising awareness of what it means to be rare
There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity.
Our key message for Rare Disease Day 2022 is SHARE YOUR COLOURS!
Find some inspiration below for ideas to take part in this year’s campaign
- Share a photo to show solidarity with people living with a rare disease in your community!
- Share a photo with painted hands on social media using #RareDiseaseDay and tag @rarediseaseday.
- Download the Rare Disease Day logo and make it visible online. Hero the logo on flyers, t-shirts and even cake-the possibilities are endless!
- Use key rare disease statistics to share the message that rare is many to the media.
- Research recently published in the European Journal of Human Genetics, article authored by EURORDIS-Rare Diseases Europe, Orphanet & Orphanet Ireland “Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database”. The analysis is of rare genetic diseases and is therefore conservative as it does not include rare cancers, nor rare diseases caused by rare bacterial or viral infectious diseases or poisonings https://www.nature.com/articles/s41431-019-0508-0
- 300 million people living with a rare disease worldwide
- Over 6000 different rare diseases
- 72% of rare diseases are genetic
- 70% of those genetic rare diseases start in childhood.
- Advocate to policy-makers that people living with a rare disease need equitable access to diagnosis, treatment and care. For more information on advocating for rare diseases as part of Universal Health Coverage see a position paper from Rare Diseases International.
- Share the new campaign materials already available in the downloads section.
- Add the official Facebook frame to your site