IORD CEO & President Prof. Ramaiah Muthyala calls for policy reforms in Andhra Pradesh, emphasizing improved rare disease healthcare, early diagnosis, and stronger government support for affected patients.
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The following is an excerpt from a news story on IORD’s World Rare Disease Day-2024 event published in Telangana Today newspaper.
In Khammam, Indian Organization for Rare Diseases hosted a World Rare Disease Day 2024 conference with Swarna Bharat Trust, bringing together patients, experts, and stakeholders.
The 100-day countdown for the World Rare Disease Day-2023 celebration, which falls on February 28, has started with the right earnestness. This year, for creating awareness among the people, short multi-lingual animation videos in several world languages with subtitles were launched for easy understanding for the local population. They include Indian languages like Hindi, Bengali,Read more
The Indian Organization for Rare Diseases (IORD) – a not-for-profit umbrella organisation – hosted a webinar on ‘Rare Diseases: Prevention’ with top global speakers on February 2, 2021. The topic assumes significance, as the estimated rare diseases population in India is about 90 million. Irrespective of what definition we use for rare diseases, more thanRead more
Source: Vaartha https://www.vaartha.com/telangana/ts-minister-etala-rajender-attends-world-rare-disease-day-event/Read more
Hyderabad: As much as 90 per cent of patients affected with rare diseases are from middle class, said Eatala Rajender, the Health Minister of Telangana, at the one-day conference on rare diseases here on Friday. The minister also said that the government had formulated a policy for ‘rare diseases’ and that there was a needRead more
Telangana State Health Minister Eatela Rajender Attends World Rare Disease Day 2020 in Hyderabad Source: Eenadu https://www.eenadu.net/latestnews/Etela-Speech-at-public-gardens-hyderabad/1600/120028427Read more
World Rare Disease Day was observed on Friday, here at Hyderabad Millions of people around the world observe Rare Disease Day on the last day of February. “Some rare diseases, such as cystic fibrosis, thalassemia, hemophilia, and Lou Gehrig’s disease ( ALS ), are well known to the public. India has already taken steps toRead more