Rare Disease Day 2025
28th February, 2025
Rare Disease Day: A Global Movement for Equity and Awareness
Imagine needing treatment for a life-altering condition – only to discover that your disease is so rare, there is no known cure, limited research, and few experts who understand it. Now, imagine struggling to access the care you or support you desperately need. This is the reality for millions of people worldwide living with a rare disease.
Rare Disease Day is held every year on February 28th – or February 29th in leap years, the rarest date of the year. This international movement works towards achieving equity in social opportunities, healthcare, and access to diagnosis and treatment for those affected.
Rare Disease Day has continued to build a global and diverse community for 17 years, united by a shared purpose: to improve the lives of people living with rare diseases.
Key Facts About Rare Diseases
- A disease is considered rare when it affects fewer than 1 in 2,000 people.
- There are more than 7000 identified rare diseases.
- 70% of rare diseases begin in childhood.
- Around 8% of Australians (2 million people) live with a rare disease.
Advocating for Change
Within Australia
The National Strategic Action Plan for Rare Diseases is the first nationally coordinated effort to address rare diseases in Australia, built on three principles: person-centred, equity of access, sustainable systems and workforce.
There are various programs and initiatives supporting the treatment and management of rare diseases.
- Medicare Benefits Schedule: Helps pay for patient care.
- Life Saving Drugs Program: Funds 16 different life-saving high-cost medicines, aiding 350+ patients annually.
- Pharmaceutical Benefits Scheme: Helps pay for medicines for rare diseases.
- Therapeutic Goods Administration: Has an orphan drug program that waives application fees for new medicines to treat rare diseases.
- Medical Research Future fund and the National Health and Medical Research Council: Funding medical research into rare diseases.
Worldwide
In February 2025, the World Health Organisation Executive Board emphasised the urgent need to priositise rare diseases as a global health issue to promote equity and inclusion.
The Executive Board recommended a resolution to be presented at the 78th World Health Assembly for adoption.
With over 300 million people living with a rare disease, the resolution recognises calls for improved diagnosis, treatment, and support systems. It also recognises the challenges faced by patients and caregivers, including but not limited to delayed diagnoses, high treatment costs, limited healthcare access, isolation and discrimination. This resolution urges universal health coverage, equitable access to medical advancements, and increased investment in research.
Resilience and Connection
2025 highlights the power of resilience and connection in overcoming challenges and driving meaningful change.
See this video on the journey of families across the globe:
Rare Disease Day 2025
By raising awareness and advocating for equitable healthcare, Rare Disease Day continues to be a beacon of hope for millions worldwide.
Interested in investing in medical research? Donate today: https://svcrf.com.au/donation/