Organization for Rare Diseases India aims to empower patients and families affected by rare diseases with access to national and international resources to improve their quality of life. We strive to catalyze the rapid development and delivery of affordable diagnostics and treatments for rare diseases through innovative collaborations and partnerships among stakeholders for the benefit of patients. Hosting public awareness events, raise and distribute funds to support education and health of patients, creating and maintaining patients registries, facilitating scientific research, clinical trial participation of patients and patient advocacy are some of the ways in which we support the cause.
Rare Genomics Institute (RG) is a 501(c)(3) non-profit organization founded in 2011 to fill the gap for care for rare disease patients. RG helps undiagnosed children and rare disease patients and their families find diagnosis, treatments, and cures by connecting them to expert scientists and biomedical researchers who have access to the most advanced technologies to diagnose and accelerate research. RG Patient Advocates have touched over 500 families and have helped more than 70 applicants acquire genetic sequencing and research.