Rare Disease
What is a Rare Disease?
Rare diseases are health conditions that have very low prevalence and affect a small percentage of people. There are over 7,000 recognized rare diseases worldwide, each differing in causes, symptoms, and treatments, with many still not well understood. Most rare diseases are genetic, often chronic or life-threatening, and patients often face challenges such as insufficient research into their health conditions, challenges in diagnosis, and access to specialized care, largely due to the rarity of their health conditions.
The challenges faced by rare disease patients in Hong Kong
The main challenges faced by rare disease patients in Hong Kong:
• Lack of an official registry: unlike some countries, Hong Kong does not have a comprehensive national registry or database for rare diseases. Lack of an official registry makes it challenging to properly track patient data, which makes it harder to improve rare disease healthcare in Hong Kong
• Limited awareness: there is often a lack of awareness and understanding of rare diseases among the general public, often leading to social isolation and neglect for patients.
• Access to treatment: Patients often face challenges in accessing specialized treatments and care, as well as receiving timely and accurate diagnoses. A lack of access to treatment also means that patients often face significant financial burdens.