Rare Disease Day 2026
- Roberto Castillo
- 2 days ago
- 2 min read
Updated: 9 hours ago
Each year on the last day of February people across the globe, come together to recognise and advocate for the 300 million plus individuals that live with a rare disease.
Many people or organisations involved strive to impact the daily lives of those who live with a rare disease by educating the public and policy makers. This focus covers many areas such as improved care, social opportunities, better treatment and being treated as individuals.
Why is it important?
Many still do not understand the effects a rare disease can have on a family and the individual themselves. Advocacy is a way to bring more awareness and put emphasis on things like more funding towards research.
Those with rare illnesses sometimes have to wait years before receiving a diagnosis and in some cases they do not. Although no two people are the same or respond the exact same way to a rare disease, having more research and case studies can help families understand what their futures may hold.
Fast facts and figures
More than 300 million worldwide have a rare disease
The number of diseases with an approved treatment sits at less than 5%
There are an estimated 7000 rare diseases globally
Some conditions are so rare they do not have a name
1 in 4 people wait at least 3 years for a diagnosis on their disease
Some diseases are so rare that they can be 1 in 1 million
Rare disease day was started on the last day of February as on leap years there are 29 days
Rare disease day support
How can you, I or anyone support rare disease day? Many organisations have digital kits for social media, there are official fund raising or donation in place, attending events, sharing your stories on sites like Luis' Space, or becoming an advocate.
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