I wish to go on small trips
 Anton, 5, Denmark
 epilepsia and multiple rare diseases

Rare Disease Day is a global awareness campaign held annually on the last day of February. Its purpose is to shine a light on the challenges faced by individuals living with rare diseases and to encourage international advocacy, research, and support.

With 70% of rare diseases starting in childhood, this initiative underscores the importance of collective action in improving outcomes and providing emotional and medical assistance to affected families.

The History and Purpose of Rare Disease Day

Rare Disease Day was established in 2008 by EURORDIS, a European patient-driven alliance, to address the limited visibility and recognition of rare diseases worldwide. Its mission extends beyond raising awareness, aiming to drive policy changes, enhance access to diagnosis and treatment, and promote equity for people with rare diseases in healthcare systems globally.

Rare Disease Day is held on February 29 during leap years. The date of February 29th – the rarest day on the calendar – symbolizes the unique challenges of living with a rare condition. On non-leap years, such as 2025, the event is held on February 28. Since its inception, Rare Disease Day has expanded significantly, with participation in over 100 countries worldwide.

This annual observance emphasizes collaboration among medical professionals, policymakers, researchers, and patient organizations to tackle common barriers, such as delayed diagnosis, inadequate treatment options, and insufficient support networks. Advocacy efforts during Rare Disease Day have contributed to medical milestones, research funding, and enhanced patient care models.

How Rare Disease Day Supports People with Rare Diseases and Families

Rare diseases often impose significant physical, emotional, and financial burdens on families. People with rare diseases frequently experience delayed diagnoses due to non-specific or common symptoms masking underlying conditions. Once diagnosed, they face limited treatment options, many of which are expensive or experimental.
Rare Disease Day brings awareness to the unique challenges faced by people with rare diseases and their families. By highlighting their stories, the campaign reduces stigma and isolation, and amplifies calls for increased support for people with rare diseases.

Make-A-Wish grants wishes to children with critical illnesses, including rare diseases, to provide life-enhancing experiences, that offer hope and relief during difficult times. This month alone, at least 6,800 children (that’s at least 82,000 per year) across our Affiliates and territories will be diagnosed with a rare disease and become eligible for a wish.

Global Initiatives and Events on Rare Disease Day

Rare Disease Day is marked by a range of activities, from awareness walks and educational conferences to public policy discussions and cultural events. Major landmarks worldwide are illuminated in the campaign’s signature colors to draw attention to the cause.

Patient advocacy organizations lead local and regional efforts, often working with schools, hospitals, and community groups. These events not only educate the public about the impact of rare diseases but also encourage individuals to engage in fundraising and volunteer efforts.

Prominent campaigns during the day highlight advances in genetic research, innovative therapies, and cross-border collaborations aimed at developing sustainable healthcare solutions. Social media plays a key role in spreading the message, with participants sharing personal stories and advocacy milestones using dedicated hashtags.

How to Participate and Show Support

Participation in Rare Disease Day is accessible to individuals, organizations, and communities worldwide. Many channels give possibilities to share personal stories, educate followers, and promote awareness. Local and virtual events provide opportunities for connecting with patient advocates, researchers, and medical professionals.
These collective efforts create a more inclusive world for people with rare diseases and their loved ones.

The Future of Rare Disease Awareness

As Rare Disease Day continues to grow, the focus remains on expanding global collaboration to raise awareness for greater support and research to ultimately enhance outcomes for people with rare diseases. The development of targeted therapies, improvements in genetic testing, and policy reforms are essential areas of progress.

Patient-centered research will play an increasingly important role, with initiatives aimed at understanding the unique needs of children living with rare diseases. Partnerships between healthcare providers, non-profits, and advocacy groups will drive innovation, ensuring that families receive timely support and that no child feels overlooked.

Governments are expected to strengthen their commitments by allocating resources to rare disease research and integrating patient voices into healthcare planning. Cross-border data sharing and collaborative research will be instrumental in developing effective treatments and care models.

With sustained awareness and advocacy, Rare Disease Day will continue to push for comprehensive solutions, giving families hope for better diagnoses, improved treatment options, and enhanced quality of life.
Join the movement to support children and families affected by rare diseases.

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