28 February 2025 – Retina International marks the 18th edition of Rare Disease Day which unites over 70 national partners across 100 countries to raise awareness and drive policy change for the estimated 300 million people living with a rare disease worldwide. This campaign initiated by patients in 2008, ensures that rare diseases remain a global priority, mobilising patient communities, researchers, policymakers, healthcare professionals, and industry leaders.
This year Retina International focuses on the significant impact of living with rare eye diseases (RED) on the mental health and wellbeing of all of those affected and those who care for them.
Retina International is working with its global patient community, its Scientific and Medical Advisory Board, industry partners and policy makers to develop this study that represents a priority for member organisations. Retina International is committed to conducting independent, high-quality research that advances our understanding of retinal diseases including rare eye disease and their broader impact on mental, psychological, and cognitive health.
Our research has been instrumental in shaping healthcare policy and guiding clinical, and research and patient communities. Retina International looks forward to presenting its first outputs next rare disease day. Stay tuned.
Rare Diseases: A Global Challenge
Rare diseases may seem distant, but they are more prevalent than commonly perceived. 5% of the global population is affected at some point in their lifetime. These conditions impact families, workplaces, and entire communities, bringing complex medical, social, and economic challenges.
Key issues include:
- Delayed Diagnoses: Patients often wait four years or longer for an accurate diagnosis, enduring uncertainty and missed treatment opportunities.
- Limited Treatment Options: Over 95% of rare diseases lack approved therapies, leaving patients with few medical solutions.
- Social and Economic Barriers: Families often face educational, employment, and financial difficulties, as care responsibilities disrupt daily life.
- Healthcare Access Inequalities: In many regions, rare disease patients encounter barriers to accessing specialised care, particularly in underserved communities.
- Educating the Public: Provide resources to schools, workplaces, and public institutions.
- Advocating for Policy Change: Urge decision-makers to improve healthcare access and patient support.
- Supporting Research and Care Initiatives: Donate to rare disease organisations and advocate for greater funding.
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Building an Inclusive Future for Rare Disease Patients
Rare Disease Day is more than an awareness event – it is a movement toward a future where people with rare diseases receive equitable access to healthcare, research, and social support. Through global collaboration, advocacy, and action, we can create meaningful change for millions worldwide.
If you would like to get involved in Retina International’s activities, support research and develop important calls to action email us at info@retina-international.org
Happy Rare Disease Day!
