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As the name suggests, rare diseases are rare but affect millions worldwide, most of whom may be left untreated due to challenges in timely diagnosis and access to treatment. The story in India is no different and maybe more complicated. The country is said to have one-third of the world’s rare disease population. This presents an opportunity to identify the issues and challenges to bridge the gap and bring value to patients with rare diseases.
Over the years, India’s rare disease landscape has witnessed considerable evolution with sustained and focused discussions. Today, the most pertinent challenge for rare disease patients is early diagnosis, availability of resources, and access to healthcare professionals. While disease awareness is gaining momentum, it is instrumental in working on a multi-pronged ecosystem approach to creating a model that ensures access to awareness, diagnosis, and treatment.
Strategic partnerships may prove instrumental in mobilizing efforts and resources across hierarchies and beyond the health sector to build a solution-oriented approach for rare diseases with the vision of universal health coverage. The responsibility of the industry is also significant here. The industry should continue investing in the research and