Rare disease day 2022

Hello, my name is Jess and I am a Zebra!

RARE DISEASE DAY 2022🦓

Today is international rare disease day, a day which means so much to me as a person with multiple rare diseases! There are over 6000 rare diseases and so many people have to fight for care every single day meaning they have to teach and guide healthcare professionals rather than the other way round!

Read moreRare disease day 2022

Webinar – Partnerships with Families Living with Rare Diseases

We invite you to attend our fifth IFNA – UK and Ireland Chapter webinar, titled “Re-shape, Re-form, Re-imagine a True Partnership With Families Living With Rare Diseases.” The free webinar will take place on Monday 28 February 2022, from 12.30pm until 2pm GMT, on Zoom. Click here to register! Coinciding with Rare Disease Day, the … Read more Webinar – Partnerships with Families Living with Rare Diseases