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Rare Disease Day

Many people living with uncommon illnesses often feel forgotten. Raising awareness can inspire research, understanding, and hope for better treatments.

Body & Health Life & Living45

Marketing angleinferred

Position your healthcare or non-profit brand as a champion of rare disease awareness and patient empowerment through storytelling and community-building initiatives.

Relevance 45low intent

Share patient stories and testimonials to humanize rare disease experiences and build brand trust
Host or sponsor virtual/in-person awareness events that connect patients, families, and medical professionals
Create downloadable educational resources and toolkits to support local community awareness campaigns
Partner with rare disease organizations to amplify research funding and treatment innovation messaging

History

Since 2008, EURORDIS has been putting in place social networks to help support individuals with rare diseases and their families, as well as coordinating events for Rare Disease Day at an international level.

The first time the event was celebrated, the day took place in leap year, so it was observed on February 29. In non leap years, the day is celebrated on February 28.

The reason the month of February was chosen for this celebration is because it is also a “rare” month, in that it sometimes has an extra day at the end.

So the common theme offers a nod to the uniqueness of the people who experience rare diseases by placing it on a unique and special day.

Each year, the celebration of the day looks a little different too. For instance, in 2010, Rare Disease Day featured balloon releases, marathons, auctions and tree planting events to raise awareness.

These types of events can be sponsored by all sorts of different communities, health care centers, hospitals, charitable foundations and so much more.

Starting 2011, Rare Disease Day began sponsorship by the National Institutes for Health (NIH), specifically by the National Center for Advancing Translational Sciences (NCATS).

The hope is that the collaboration between a wide variety of scientists, researchers, medical professionals and others will bring more attention to rare diseases with the hope of finding treatments and cures.

How to celebrate

Share Rare Disease Experiences

Each year, people affected by rare diseases are encouraged to share pictures and their stories with the world. The Rare Disease Day website offers opportunities for folks from all over the globe to learn more about each other by posting their own stories and reading other people’s stories. The website contains hundreds of stories in many languages, creating a worldwide community of people with rare diseases who can feel more seen and heard.

Attend a Rare Disease Day Event

Get connected with people in the local community or across the planet by joining in with events for Rare Disease Day, whether online or in real life. Check out the Rare Disease Day website for more information about events that are taking place in many countries and a wide range of languages.

Host a Rare Disease Day Event

Those who are interested in raising awareness and promoting the stories of those who have rare diseases may be interested in hosting an event in their local community or online. Whether it is an informal gathering of friends to raise awareness and support, a book club where a biography of a person with a rare disease is discussed, or an informational gathering with a medical professional as a guest speaker, the opportunities are almost endless. The Rare Disease Day website offers plenty of resources including downloadable kits, info-packs, posters and many other tools! Rare Disease Day TimelineJanuary 4, 1983The United States enacts the Orphan Drug ActThe Orphan Drug Act became law, creating tax credits, grants, and seven years of market exclusivity to spur the development of treatments for rare diseases affecting fewer than 200,000 people in the U.S.[1]December 16, 1999European Union adopts Orphan Medicinal Products RegulationThe European Parliament and Council approve Regulation (EC) No 141/2000 on orphan medicinal products, establishing incentives and a formal EU framework for developing drugs for rare conditions.[1]June 27, 2000EU Orphan Regulation 141/2000 enters into forceRegulation (EC) No 141/2000 takes effect, enabling centralized designation of orphan medicines and coordinated support across member states for therapies targeting rare diseases.[1]November 20, 2008EU issues “Rare Diseases: Europe’s Challenges” communicationThe European Commission publishes a strategy document on rare diseases, calling for better coordination, national plans, and improved access to diagnosis, information, and care.[1]June 8, 2009Council recommends national plans for rare diseasesThe Council of the European Union adopts a recommendation urging member states to develop national plans for rare diseases by 2013 to strengthen the organization of care and research.[1]March 9, 2011European Reference Networks framework establishedDirective 2011/24/EU on patients’ rights in cross‑border healthcare is adopted, creating the legal basis for European Reference Networks that later connect expert centers on many rare diseases.[1]2017Launch of the first European Reference NetworksThe European Commission formally launches 24 European Reference Networks, linking hundreds of specialized centers to share expertise and improve diagnosis and treatment for patients with rare and complex diseases.[1]

The United States enacts the Orphan Drug Act

The Orphan Drug Act became law, creating tax credits, grants, and seven years of market exclusivity to spur the development of treatments for rare diseases affecting fewer than 200,000 people in the U.S. [1]

European Union adopts Orphan Medicinal Products Regulation

The European Parliament and Council approve Regulation (EC) No 141/2000 on orphan medicinal products, establishing incentives and a formal EU framework for developing drugs for rare conditions. [1]

EU Orphan Regulation 141/2000 enters into force

Regulation (EC) No 141/2000 takes effect, enabling centralized designation of orphan medicines and coordinated support across member states for therapies targeting rare diseases. [1]

EU issues “Rare Diseases: Europe’s Challenges” communication

The European Commission publishes a strategy document on rare diseases, calling for better coordination, national plans, and improved access to diagnosis, information, and care. [1]

Council recommends national plans for rare diseases

The Council of the European Union adopts a recommendation urging member states to develop national plans for rare diseases by 2013 to strengthen the organization of care and research. [1]

European Reference Networks framework established

Directive 2011/24/EU on patients’ rights in cross‑border healthcare is adopted, creating the legal basis for European Reference Networks that later connect expert centers on many rare diseases. [1]

Launch of the first European Reference Networks

The European Commission formally launches 24 European Reference Networks, linking hundreds of specialized centers to share expertise and improve diagnosis and treatment for patients with rare and complex diseases. [1]

FAQ

Why is the zebra a symbol for rare diseases?

The zebra symbolizes rare diseases due to a medical teaching adage: “When you hear hoofbeats, think horses, not zebras.” This means common conditions are more likely than rare ones. However, the zebra reminds healthcare professionals to consider uncommon diagnoses for rare disease awareness. Each zebra’s unique stripes also represent the individuality of rare disease patients.

How did Rare Disease Day become a global event?

Rare Disease Day began in Europe in 2008. By 2009, the National Organization for Rare Disorders (NORD) introduced it in the U.S., expanding its reach. Now, over 100 countries participate, hosting events to raise awareness and support for those affected by rare diseases.

What are some unique ways countries celebrate Rare Disease Day?

In Sweden, the Rare Stories film festival showcases films about rare diseases. In Canada, trivia nights educate participants about rare conditions. These events foster community engagement and awareness.

Are there any myths or misconceptions about rare diseases?

A common myth is that rare diseases affect only a few people. Collectively, they impact over 300 million worldwide. Another misconception is that rare diseases lack treatments; while many do, research is ongoing to find cures.

How did the “Show Your Stripes” campaign originate?

The “Show Your Stripes” campaign encourages people to wear striped clothing, symbolizing the zebra’s association with rare diseases. It aims to raise awareness and show solidarity with those affected.

Why is Rare Disease Day held on February 28 or 29?

February 29, the rarest day, was chosen to symbolize the uniqueness of rare diseases. In non-leap years, it’s observed on February 28. This date highlights the uncommon nature of these conditions.

What role do patient stories play in Rare Disease Day?

Patient stories personalize the challenges of living with rare diseases. Sharing experiences fosters understanding and empathy, encouraging support and advocacy. These narratives are central to awareness campaigns.

How has social media influenced Rare Disease Day?

Social media amplifies Rare Disease Day’s reach. Hashtags like #RareDiseaseDay connect global participants, spreading awareness and information. Online platforms enable virtual events, uniting communities worldwide.

Are there any notable public figures involved in Rare Disease Day?

Public figures, including actors and athletes, often participate in Rare Disease Day events. Their involvement brings attention to the cause, leveraging their platforms to educate and advocate for those affected.

How can individuals contribute to Rare Disease Day?

Individuals can participate by attending events, sharing information on social media, or organizing local activities. Donating to research organizations and supporting affected families also make a significant impact.