DIVERSITY, EQUALITY & INCLUSION
Rare diseases, clinical trial research and global demographic population changes present complex
By Jenifer Ngo Waldrop, Executive Director, Rare Disease Diversity Coalition R
are diseases, which are often called orphan diseases due to their rarity, pose significant healthcare challenges. They
are frequently overlooked in mainstream medical research and treatment, leading to limited understanding, treatment options and health disparities among those affected. Understanding and addressing the intersection of rare diseases, health disparities and clinical trial research is crucial for equitable healthcare as the global demographic landscape evolves.
Understanding rare diseases Rare diseases, by definition of their low prevalence, affect a small portion of the population. In various countries, a disease is classified as rare if it affects fewer than 200,000 people in the US, fewer than 50,000 people in Japan and fewer than one in 2,000 people in the EU. Collectively, rare diseases have a significant global impact, affecting approximately 30 million to 40 million people in the US and nearly 400 million worldwide.
The National Institute of Health identifies more than 10,000 known rare diseases , and new ones continue to be discovered, highlighting the need for ongoing research to understand their mechanisms and potential treatments.
Health disparities and rare diseases Health disparities are differences in health outcomes and access to healthcare among various groups, influenced by factors such as socioeconomic status, race, ethnicity, education and location. Individuals with rare diseases often face amplified health disparities due to the unique complexity of their condition.
1. Delayed or misdiagnosis: Rare diseases are challenging to diagnose due to their rarity, often leading to misdiagnosis or delay, allowing conditions to progress unchecked. Lee, a patient living with sarcoma, who shared her case about being misdiagnosed for eight years and her odyssey of seeing seven specialists, is now living with primary progressive multiple sclerosis, exemplifying the common misdiagnosis experiences within the rare disease community.
2.
Limited access to specialised care: Care for specialised rare diseases is typically concentrated in specific healthcare centres or urban areas, creating obstacles for those living in rural or underserved regions, necessitating extensive travel and related expenses.
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challenges in healthcare A collaborative approach is needed to address the issues posed by rare diseases, reduce health disparities and ensure equitable access to care for everyone.
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