MalayMail-Apr 16
Rare diseases affect only a small number of people, but for those living with them in Malaysia, the struggle is real and often overlooked. Although rare diseases affect fewer than one in 4,000 people, these conditions are enigmatic and often not fully understood. As of 2020, Malaysia has documented 491 rare diseases. However, a thorough understanding remains elusive due to limited epidemiological data. Rare diseases, by definition, are health conditions that affect a small fraction of the population. They often present with various symptoms that not only differ from one disease to another but also within the same condition. The rarity and diversity of these diseases create significant challenges in diagnosis, treatment, and management. While each rare disease is uncommon, together they affect many people around the world — including in Malaysia. According to Malaysia Rare Disease Society president Nadiah Hanim Abdul Latif, it is estimated that one million Malaysians are living with a rare disease. She said the estimation aligns with the 2020 evidence-based analysis of the Orphanet database, suggesting that 3.5 per cent to 5.9 per cent of the global population is affected by rare conditions. However, Nadiah said the figures are just estimates because Malaysia lacks a national patient registry, making the exact number of those impacted unclear. Despite these challenges, Nadiah said the Malaysian rare disease ecosystem now benefits from enhanced collaboration among healthcare providers, government agencies, policymakers, industry, and patient groups. “Our efforts have not only strengthened within Malaysia but have extended to regional and international levels. Leaders from the 20 rare disease organizations in Malaysia are taking active roles in international rare disease forums,” she added. According to Nadiah, addressing rare disease treatment in Malaysia is critical due to significant healthcare system challenges. “Although each rare disease is uncommon individually, collectively they affect a substantial population, necessitating management approaches akin to non-communicable diseases,” she said. Read more at:
