Vijayawada: The Indian Organization for Rare Diseases (IORD), a non-profit advocacy body, convened a critical conference titled “RAISE THE AWARENESS – RARE DISEASES: Advocate Public Policy, Promote Diagnosis, Treatment & Social Services” at Fortune Murali Park, Vijayawada on February 28, to mark World Rare Disease Day 2025.
The event, attended by healthcare experts, policymakers, and patient advocates, spotlighted the urgent need for systemic interventions to address the challenges faced by over 90 million Indians and 300 million individuals globally living with rare diseases. Check the videos here and media coverage here.
Global and National Crisis
With over 7,000 identified rare diseases impacting 5% of the world’s population, patients in India grapple with delayed diagnosis, scarce treatments, and exorbitant healthcare costs. In Andhra Pradesh alone, thousands remain undiagnosed or untreated due to limited infrastructure and awareness. Extrapolating from the 2021 census data, Andhra Pradesh’s population is approximately 5.27 crore (52.787 million).
Assuming a 5% prevalence of rare diseases, the estimated rare disease population in Andhra Pradesh is approximately 26.39 lakh.
Key Recommendations for Andhra Pradesh
The conference outlined six actionable proposals for the Andhra Pradesh Health Ministry to transform rare disease care:
- Establish a Centre of Excellence (CoE): Upgrade AIIMS Mangalagiri as a Centre of Excellence for rare disease treatment, leveraging central funds to enhance access to specialized care.
- State-Funded Rare Disease Centre: Provide genetic counselling, subsidized testing, and a toll-free helpline under existing health schemes.
- Statewide Rare Disease Survey: Train Anganwadi workers to conduct a pilot survey, enabling data-driven policy formulation. IORD would be glad to facilitate the training.
- National Family Health Survey (NFHS) Inclusion: Advocate adding rare disease questions to NFHS-6 for rare disease prevalence mapping in the state.
- District-Level Coordination Committees: Streamline referrals and central funding access for Rs. 50 lakh/patient under Rashtriya Arogya Nidhi.
- Centralized Drug Procurement: Negotiate bulk purchases of therapies like enzyme replacements to reduce costs for rare disease patients.
Sri Satya Kumar Yadav, Hon’ble Minister for Health, Andhra Pradesh, emphasized, who could not be physically present in view of the assembly session, said “We are committed to evaluating IORD’s proposals to build an inclusive healthcare framework.”
Dr. Ramaiah Muthyala, IORD President, added, “Andhra Pradesh has the potential to lead India in rare disease care. Prioritizing these steps will save lives and set a national benchmark.” While submitting a memorandum to the Sri M.T. Krishna Babu, IAS, Special Chief Secretary, Health Medical & Family Welfare, Govt. of Andhra Pradesh, Dr Ramaiah Muthyala requested the Andhra Pradesh government to take up actionable steps for the betterment of rare disease community. Check his speech here.
In his address, Sri M.T. Krishna Babu, IAS, Special Chief Secretary, Health Medical & Family Welfare, Govt. of Andhra Pradesh, promised a slew of healthcare measures for rare disease community in the state besides listing out several steps the AP government has already initiated. He said that the AP government would initiate steps to provide affordable medications/drugs for rare disease patients by seeking a list of such drugs from Director of Medical Education, AP. He also promised to seek a Centre of Excellence for Rare Diseases designated by the Centre either at AIIMS Mangalagiri or Andhra Medical College, KGH besides utilizing the services of ASHA and ANM health workers for creating awareness and identification of rare disease patients. Please check the full video for his speech.
Some of the actionable steps for rare disease community listed by him included roping in Anganwadi and ASHA workers and utilising health workers for gathering rare disease date through National Family Health Survey in the state. Check this speech here.
National Institution for Transforming India (NITI) Aayog member Dr. Vinod K. Paul, Member, in his video address to the participants, presented significant developments in India’s approach to rare diseases. The government has prioritized treatment for 13 rare disorders, including both small molecule drug treatments and complex therapies. Please check his video address here.
**The event also featured insights made by Dr. G. Samaram (Ex-IMA President), Shri Y.D. Ramarao, Chairman, Indian Red Cross Society, Andhra Pradesh, Dr. K. Pattabhi Ramaiah, Kamineni Clinic, Convener, Indian Organisation for Rare Diseases, Mr. Ch Murali, co-founder, Bharat MD Foundation, Ms S Shobha Rani, Founder, Amaravathi Rare Diseases Organization.
Also present were IORD MC members Dr Srinivas Namineni, Shri RK Agrawal, IORD secretary Dr Krishnaji Rao Muthyala and Prabeer Sikdar, IORD coordinator.
