Lubin, aged 12, is from Juvisy, France and is living with spinal muscular atrophy (SMA) which affects 1-9 in 100,000 people. Diagnostic Journey Around the… Continue reading Meet Lubin

Kin Ping  is living with retinitis pigmentosa. He was diagnosed as a teen after 10 years of visiting dozens of ophthalmologists. Retinitis pigmentosa symptoms include… Continue reading Meet KP

Download the official Rare Disease Day 2020 poster to display at your events, workplace or home and to share the message that Rare is many worldwide,… Continue reading New Rare Disease Day Poster 2020 out now!

Gauthier, aged 4, and his mother Eloise feature on the Rare Disease Day 2020 official poster. He is from Charleroi, Belgium and lives with the… Continue reading Meet Gauthier

The countdown has begun for the 13th edition of Rare Disease Day! Rare Disease Day will take place on 29 of February 2020, the rarest… Continue reading 100 days until Rare Disease Day 2020!

Rare Disease Day 2020 is on Saturday 29 February – a very rare day as it is a leap year. This year our message is… Continue reading Rare is many. Rare is strong. Rare is proud

We have come a long way from the first Rare Disease Day which took place over a decade ago in 2008 when 18 countries took… Continue reading Thank you to all who took part in Rare Disease Day 2019

Today on Rare Disease Day 2019 the worldwide rare disease community is joining together to raise awareness of rare diseases by holding events, conferences and… Continue reading Today is Rare Disease Day 2019

Rare Disease Day 2019 puts rare disease patient stories in the spotlight. This year’s campaign brings together three testimonial videos that tell the stories of… Continue reading Watch new patient videos for Rare Disease Day 2019