Bengaluru, February, 2026, Organization for Rare Diseases India (ORDI) today hosted a press conference in Bengaluru ahead of the upcoming Racefor7 awareness run scheduled on 22nd February 2026. In a strong call for awareness, equity in healthcare, and urgent policy attention for rare diseases.
The conference brought together medical experts, rare disease patients and caregivers, and advocacy leaders to highlight the growing challenges faced by India’s rare disease community and the need for collective action.
Mr. Prasanna Shirol, Co-founder and Executive Director, ORDI, emphasised the role of community-led movements such as Racefor7 in bringing rare diseases into mainstream public discourse,“India has made progress in the rare disease space through greater awareness and evolving policies, but the focus must now shift to structured, sustained action. Patients need timely diagnosis, comprehensive supportive care, and equitable access to all available therapies, regardless of geography or affordability, supported by sustainable national funding. Platforms like Racefor7 help turn awareness into action by uniting stakeholders to drive advocacy and solutions, while stronger investment in research and innovation remains essential for long-term progress. Equitable access to treatment must be the standard of care, not a privilege.”
Dr. Meenakshi Bhat, Head – Director, CHG. Karnataka, added, “For many years, the management of rare genetic disorders focused on early diagnosis and prevention. After the announcement of the National Policy for Rare Diseases, 2021, the emphasis is now on treatment of rare genetic diseases. Therapies are available for only 5% of 7000 known rare disorders, but many are very expensive and imported. Going forwards, it will be important to make indigenous, affordable treatments for genetic disorders in India. Where no treatment is available, doctors and scientists need to work together to develop new therapies. At the Centre for Human Genetics, we have established the Institute of Advanced Genome Editing and Gene therapy with the support of the Karnataka government to develop new treatment strategies”
Adding an industry perspective, Dr. Mayur Shah, Head – Rare Disease Franchise, Sanofi (India) “At Sanofi, we believe that rare should never mean forgotten. For over three decades, we have stood alongside the rare disease community, not just as a healthcare company, but as partners in their journey toward dignity, access, and hope. Racefor7 embodies this spirit of collective action that transforms awareness into impact. When thousands come together to run for the 7,000+ rare diseases affecting over 300 million people worldwide, it sends a powerful message: no patient should navigate this journey alone.
Corporate leadership in rare diseases goes beyond developing treatments; it means championing visibility, driving policy dialogue, and building ecosystems of care. At Sanofi India, we remain deeply committed to ensuring that every rare disease patient, regardless of how rare their condition, has the opportunity for early diagnosis and timely access to the miracles of science that we’re chasing each day. This is not just our responsibility; it is our purpose.”
A key highlight of the press conference was the participation of rare disease patients and caregivers, who shared deeply personal journeys marked by years of diagnostic uncertainty and the emotional as well as financial burden of managing lifelong conditions. Their stories reinforced the urgent need for faster and more accessible genetic testing, greater awareness among frontline doctors, stronger financial protection, and more effective implementation of existing rare disease policies.
Racefor7, ORDI’s flagship annual awareness initiative held in observance of Rare Disease Day, brings together patients, families, doctors, researchers, students, corporates, and citizens in solidarity with the rare disease community. This year’s event aims to expand public understanding, promote early diagnosis and referral, and advocate for improved access to treatment and care. Speakers also stressed that while rare disease policies in India are evolving, significant implementation gaps remain, calling for wider disease inclusion under support frameworks, stronger Centres of Excellence, increased research and data collection, and robust public–private partnerships to improve treatment access.
