Telangana: In the run-up to the implementation of the ground-breaking proposal to count rare disease patients within Telangana state, the Indian Organization for Rare Diseases (IORD) organised an awareness event on Rare Diseases for health workers including Accredited Social Health Activist (ASHA) members at Kamepally village in Khammam, Telangana on 10 November 2022.
While addressing the health workers at ‘Rythu Vedika’ meet at Kommenapally village in Khammam, IORD President & CEO Prof Ramaiah Muthyala said that there are 9 crore Indians living with a rare disease in the country.
“Out of every 10 people with a rare disease, 3 of them die before reaching the age of five years. There are about 7,000 rare diseases and 95% of them do not have any treatment,” he informed.
It may be recalled that Project Y and the Rare Care Centre at Perth, Australia, Children’s Hospital have partnered with the Indian Organisation for Rare Diseases (IORD) to improve rare disease visibility and recognition on a global scale.
The exercise for the enumeration of the rare disease population has been approved by the health commissioner of Telangana. Besides ASHA workers, the awareness programme was also attended by local Sarpanch and medical staff from local Primary Health Centres (PHCs).
