Rare Disease Day 2025

28 February marks Rare Disease Day (RDD), an annual observance occurring on 29 February, the “rarest” day of the year! Established in 2008, Rare Disease Day is a global movement advocating for social equity, healthcare access, and diagnosis and therapies for those with rare diseases. Observed annually on February 28 (or 29 in leap years), RDD aims to enhance awareness of rare diseases, which can impact 1 in 20 individuals at some point in their lives. Unfortunately, the majority of these conditions lack a cure, and numerous cases go undiagnosed.

Consequently, on this day, IF collaborates with global organisations dedicated to rare diseases and disabilities. IF is particularly passionate about advocating for multidisciplinary care for those living with SBH and urging improved collaboration among medical, social, and support services.

Recognising rare diseases as a global health priority

IF has recently joined Rare Diseases International’s coalition of 224 organisations around the globe in support of the adoption of the WHA Resolution on Rare Diseases. Led by Egypt and Spain, and in total 26 Member States co-sponsoring the Resolution and 224 global organisations uniting in a Coalition to support it, this strong momentum reflects the growing recognition of rare diseases as a global health priority.

Read the draft resolution here

Ensuring health equity for all

The draft WHA Resolution underscores IF’s priorities to ensure health equity for all as per the recent historic Kuala Lumpur Declaration.

You can read more and co-sign the Kuala Lumpur Declaration here

Join the discussion on social media!

Download the toolkit and join the discussion on social media using the hashtags: #Resolution4Rare #WHA78 #EB156 #WHO #HealthforAll #RareDiseases #SpinaBifida #Hydrocephalus #SBH

For more information about Rare Disease Day, visit: www.rarediseaseday.org