The following is an excerpt from a news story on IORD’s World Rare Disease Day-2024 event published in Telangana Today newspaper.
Khammam: Everyone, regardless of their health condition deserves access to quality healthcare and support, especially those suffering from rare diseases, stated Indian Organisation for Rare Diseases (IORD) president Prof. Ramaiah Muthyala.
He addressed a gathering at a conference organised by the IORD , a not-for-profit national advocacy organisation dedicated to the cause of patients with rare diseases, in association with Swarna Bharat Trust here on Sunday commemorating the World Rare Disease Day-2024.
Prof. Ramaiah noted that the conference was aimed to addressing the challenges faced by people living with rare diseases and their families, including the unavailability and unaffordability of medicines. He highlighted the importance of advocating for affordable treatments and promoting patient support groups and registries.
Nearly 7, 000 identified rare diseases affect over 300 million people worldwide, including 90 million Indians.
In most countries, rare disease patients have to struggle for equitable access to diagnosis, healthcare, social care, and opportunity all through their life. Most of the patients endure rare diseases, which do not have approved treatments or a cure in the near future, he said.
In 2021, the union Ministry of Health and Family Welfare drafted a national policy for rare disease treatment. The policy was inadequate to serve the needs of rare disease patients as it was drafted by borrowing the US definition of rare diseases.
To have a definition suitable for India, one must know the prevalence or count of rare disease patients in the country. To accomplish it IORD initiated a pilot project to make an approximate count of rare disease patients with the support of the Telangana government engaging ASHA workers for a study in Khammam.
Preliminary results were very encouraging and received worldwide attention to adapt similar approaches to determine the prevalence of rare diseases, said Prof. Ramaiah. Swarna Bharat Trust executive, Vijay Mohan Suri, Govt. Medical College principal Dr. Rajeswar Rao, DM&HO Dr. V Subba Rao, ex-corporator Deepak Chowdary Nagandla and Dr. Samineni Raghavaulu were present.
