Saurabh Singh is a prominent patient advocate and healthcare activist who serves as co-founder and director of the Rare Diseases India Foundation (RDIF). He is widely recognized for his leadership in advocating for improved policies, access to treatment, and support systems for individuals living with rare diseases in India.

Founded in 2019, RDIF is a non-profit patient advocacy organization dedicated to raising awareness, improving early diagnosis, and strengthening treatment pathways for rare diseases across the country. The foundation works closely with patients, caregivers, clinicians, policymakers, and researchers to address systemic gaps in awareness, diagnostics, treatment access, and long-term care for rare disease communities.

Saurabh Singh’s advocacy is deeply personal. He became a leading voice in the rare disease movement after his son was diagnosed with Hunter syndrome (mucopolysaccharidosis II), a rare and life-threatening genetic disorder. This experience inspired him to actively campaign for better healthcare support, funding mechanisms, and policy implementation for families affected by rare diseases.

As a spokesperson for the rare disease community, Singh has consistently highlighted gaps in the implementation of the National Policy for Rare Diseases (2021), particularly the challenges patients face in accessing expensive treatments and the limitations of existing funding mechanisms. He regularly engages with policymakers, healthcare institutions, and patient groups to advocate for sustainable financing, broader insurance coverage, and stronger national research efforts in rare diseases.

Through RDIF initiatives, national forums, and collaborative advocacy efforts, Saurabh Singh continues to champion the cause of rare disease patients in India—working to ensure that families receive timely diagnosis, equitable treatment access, and meaningful policy support in one of the country’s most underserved healthcare areas.