Rare Disease
Over 6,000 rare diseases are characterised by a wide range of conditions and symptoms that can vary not only between diseases but also among individuals with the same condition. Seventy-two per cent of rare diseases are genetic, and nearly one in five cancers is classified as rare. Some common symptoms may overlap with those of rare diseases, which can make diagnosis challenging and delay access to appropriate care. These conditions can impact daily life due to their long-term, evolving nature.
In many cases, there are limited treatment options, highlighting the need for continued research and support for individuals and families affected.
Overview
The 18th edition of Rare Disease Day 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.
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
- 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.
How to Get Involved
Rare Disease Day is a call to action. Individuals, organisations, and institutions can participate by:
- Raising Awareness: Share stories and key facts using official campaign materials and hashtags.
- Engaging with Communities: Host or attend awareness walks, webinars, and fundraising events.
- 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.
- Showing Solidarity: Light up buildings in Rare Disease Day colours, wear campaign-themed merchandise, or participate in virtual events.
For more information, visit RareDiseaseDay.org.
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