Rare Disease Day – Shining a Light on the Unseen

Rare Disease Day is observed annually on the last day of February. This global initiative raises awareness for the over 300 million people worldwide living with one of more than 6,000 identified rare diseases. Coordinated by EURORDIS (The European Organisation for Rare Diseases) and national alliances, Rare Disease Day promotes improved access to diagnosis, treatment, support, and inclusion for individuals affected by rare conditions.

Key Facts About Rare Disease Day

Why Rare Disease Day Matters

Although each rare disease may affect a relatively small number of individuals, collectively they impact millions of families worldwide. Rare Disease Day focuses on:

• Improving visibility: Highlighting the experiences of people with rare diseases
• Encouraging research: Boosting funding and medical innovation for rare conditions
• Supporting equality: Advocating for access to diagnosis, care, and treatment regardless of location
• Fighting stigma: Promoting understanding and inclusion of those with rare and often misunderstood conditions

The History of Rare Disease Day

Rare Disease Day was first launched in 2008 by EURORDIS and has since grown into a globally recognised campaign. It is held on February 28th—or 29th in leap years—symbolising the rarity of the occasion and the conditions it represents. Events have included:

• Awareness walks and runs
• Landmark light-ups in rare disease colours
• Social media campaigns with the #ShowYourRare hashtag
• Personal story sharing to humanise the conditions
• Fundraising galas, auctions, and educational conferences

How to Get Involved in Rare Disease Day

• Share your story: Post a video, blog, or photo using the hashtag #RareDiseaseDay
• Join or host an event: Attend a local or virtual awareness walk, panel, or fundraiser
• Wear stripes or colours: Show your support by wearing stripes, the symbol of Rare Disease Day
• Support a charity: Donate to or volunteer for organisations like EURORDIS or Rare Disease UK
• Educate your network: Help spread awareness at school, work, or on social platforms

Frequently Asked Questions

What is a rare disease?

A rare disease is defined in the EU as a condition affecting fewer than 1 in 2,000 people. In the US, it’s defined as affecting fewer than 200,000 Americans.

How many rare diseases are there?

There are over 6,000 identified rare diseases, most of which are genetic, chronic, and often life-threatening.

When is Rare Disease Day celebrated?

It is observed on the last day of February each year, which is February 28th or 29th during a leap year.

Who organises Rare Disease Day?

EURORDIS (European Organisation for Rare Diseases) coordinates Rare Disease Day at the international level, alongside national alliances and organisations globally.

How can I support the rare disease community?

Support can include raising awareness, sharing stories, donating to research, advocating for improved healthcare access, or volunteering for a relevant organisation.

Future Dates for Rare Disease Day

Hashtags for Visibility

• #RareDiseaseDay
• #ShowYourRare
• #RareButStrong
• #RareDiseaseAwareness
• #LightUpForRare