Rare Diseases Day 2025
Humans living with rare diseases need help. The purpose of this day is to unite and raise awareness for over 300 million people living with a rare disease across the globe.
Purdie Pascoe is dedicated to partnering with life science companies to make timely, informed decisions, and help improve the lives of those affected by rare diseases worldwide.
Key Insights about Rare Diseases
The Numbers Matter
Rare diseases, though individually uncommon, collectively affect a significant portion of the global population. Over 300 million people worldwide live with a rare disease. With more than 7,000 rare diseases identified and new ones being discovered regularly, the scope of this issue is vast and continually expanding.
Delayed Diagnoses = Delayed Treatment
One of the most challenging aspects of rare diseases is the delay in diagnosis. On average, it takes 4-5 years for a patient to receive an accurate diagnosis. During this time, misdiagnoses are common, which can lead to unnecessary treatments and worsening symptoms. This delay not only affects the physical health of patients but also their emotional well-being.
Limited Treatment Options
The treatment landscape for rare diseases is stark. 95% of rare diseases have no FDA-approved treatment. Many of these diseases are genetic, requiring advanced therapies such as gene and cell therapy. The lack of approved treatments highlights the urgent need for continued research and development in this field.
Emotional & Financial Burden
Living with a rare disease often comes with a significant emotional and financial burden. The cost of care for rare diseases is typically 2-5 times higher than for more common conditions, which can add financial stress to an already challenging situation.
The Power of Advocacy & Research
Despite these challenges, there is hope. Increased awareness of rare diseases drives more research and funding for treatments. Patient communities and advocacy groups play a crucial role in this process, influencing policy changes and supporting drug development. Their efforts are vital in improving the lives of those affected by rare diseases.
Purdie Pascoe’s market research expertise in rare diseases
Our team has extensive experience conducting rare disease primary market research and works with an excellent network of partners to help recruit doctors, nurses and patients in a wide range of rare diseases. We understand the nuances and specialised care needed to help you navigate the complex landscape and achieve success by improving outcomes for those affected.