This is a transcribed speech of Sri M.T. Krishna Babu, IAS, Special Chief Secretary, Health Medical & Family Welfare, Govt. of Andhra Pradesh highlighting need for Strengthening Rare Disease Care in Andhra Pradesh. He delivered this speech at the World Rare Disease Day 2025 conference, organized by the Indian Organisation for Rare Diseases in Vijayawada, Andhra Pradesh, on February 28, 2025. Check the full speech in this video!
Hello everyone!
The Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala Garu, has put in tremendous effort in the field of rare diseases. His passion and dedication to this cause are truly commendable.
We are honored to be associated with this noble initiative. We extend our heartfelt congratulations and appreciation to Prof. Ramaiah Garu and his team for their sincere efforts in raising awareness about the prevalence of rare diseases and bringing stakeholders together on a common platform to explore the best possible solutions. As Prof. Ramaiah Garu has already emphasized, while we cannot reverse the past or cure all rare diseases, we can certainly create an environment that provides comfort and dignity to those affected.
The World Health Organization (WHO) estimates that 65 people in one lakh people are affected by rare diseases. However, statistics indicate that nearly 5% of the population suffers from some form of rare disease. While some of these conditions are partially treatable, others require lifelong treatment, often with expensive medications.
In 2021, the Government of India introduced the National Policy for Rare Diseases, which provides a structured approach to addressing these conditions. Under this policy, individuals can register at one of the 12 designated Centers of Excellence for Rare Diseases. However, given that India has a population of nearly seven to eight crore people affected by rare diseases, these centers alone are insufficient.
Every state government must formulate its own policy to address this pressing issue. Unfortunately, due to a lack of awareness and vocal representation from affected individuals, governments have not allocated substantial budgetary resources for rare disease treatments.
One key recommendation from the Indian Organisation for Rare Diseases is to establish a Center of Excellence for Rare Diseases in Andhra Pradesh. This would ensure that individuals with rare diseases receive proper guidance, registration, and benefits from the Rashtriya Arogya Nidhi (RAN) scheme, which provides up to ₹50 lakh worth of medicines for registered patients. Potential locations for this center include AIIMS Mangalagiri or King George Hospital (KGH), which is affiliated with the 100-year-old Andhra Medical College and has a strong presence of specialized and super-specialized departments.
Although KGH has already been designated as a Center of Excellence for certain diseases, rare diseases require official notification from the Government of India. We will assess the necessary facilities and work towards securing this recognition, ensuring that Andhra Pradesh contributes effectively to the management of rare diseases.
The Indian Organisation for Rare Diseases is driven by dedicated and passionate individuals who are committed to this cause. I am confident that they will develop a practical strategy that enables the state government to take significant steps toward managing rare diseases effectively. We are eager to collaborate with IORD and its selfless team members, who tirelessly work for the well-being of disadvantaged individuals and their families.
No family willingly wishes to deal with such challenges—it is beyond human control. However, it is our responsibility to manage these circumstances in the best possible way. Support must come not only from the government but also from society at large. Once a practical plan is developed, we are ready to collaborate to bring solace to affected families.
Our honorable Andhra Pradesh Chief Minister, Shri N. Chandrababu Naidu, has emphasized the importance of genetic mapping. He has initiated a massive effort to conduct genome sequencing and develop a disease profile of the population using advanced genetic analytics.
We hope that future efforts in identifying and registering affected individuals will help them access better medical care. Once a condition is diagnosed, we can plan further steps, such as identifying available treatment facilities, facilitating sponsorships, and coordinating with relevant organizations to ensure quality healthcare.
I sincerely hope that the two decades of hard work by the Indian Organisation for Rare Diseases will bear significant fruit in the coming years. I urge the members to continue their efforts with the same enthusiasm and take this campaign forward. The government will do its best to support and strengthen these initiatives.
Thank you for organizing this meeting in Vijayawada for the second time. Being from a Telugu-speaking state, you bring a special passion to this cause, and we are confident that your presence will be instrumental in helping Andhra Pradesh take a leading role in rare disease management.
Thank you very much.
Jai Hind!
👉 Did you know that India is dedicating itself to developing treatments for rare diseases, aiming to ensure that every affected family receives the necessary care. For more details, watch the presentation made by Dr. Vinod K. Paul, Member of NITI Aayog at the World Rare Disease Day 2025 conference in Vijayawada on 28 February here!
