Hyderabad, February 27th, 2023: Indian Organization for Rare Diseases (IORD), a not-for-profit national advocacy organization, working for the cause of patients with rare diseases, spanning over the last fifteen years, hosted an awareness Bikeathon and Walkathon, to commemorate the World Rare Disease Day-2023, in association with the Government of Telangana. The event was supported by Nakoda Chemicals Ltd and Jeedimetla Effluent Treatment Limited (JETL).
The awareness Bikeathon and Walkathon was flagged off by Shri Jayesh Ranjan, IAS), Principal Secretary, I & C & IT,, Government of Telangana; today at People’s Plaza, Necklace Road. Over a thousand participants, including several survivors and patients suffering from these rare ailments, joined along with their kin.
Chief Guest Shri Jayesh Ranjan, addressing the gathering said, congratulate Indian Organization for Rare Diseases, for focusing on this very important aspect of healthcare. The whole world will observe the World Rare Disease Day, in two days from now. But to maintain focus through various awareness activities is something which is very relevant and important. Some of you will know that for the last two days a very important life sciences event was happening in the city called Bio Asia and there too on certain occasions we discussed this issue with some of the companies who manufacture medicines for some of these rare diseases. Finding medicine for such rare diseases is very difficult and the cost is exorbitant. We discussed with companies on how they could bring down the cost for such medication. As Dr Ramaiah Muthyala garu, discussed, there are precedents in other countries on how to take care of subsidizing and finding other alternatives financing methods for medication of these kinds of rare diseases. We discussed with Novartis on the company itself absorbing some of the costs, discussions are happening, hopefully we could arrive at some midway to provide a more structured kind of a safety net for these unfortunate patients. Yesterday I met people from Order a Genie Foundation, they are doing a deep study to identify some indicators which make some families susceptible to these kinds of rare diseases. They are contemplating some kind of a genetic screening program; collaborative opportunities could be explored with them. I am happy to see good turnout to support this cause and happy to represent the Government at this World Rare Disease Day-2023, Bikeathon and Walkathon hosted by Indian Organization for Rare Diseases.
Prof. Ramaiah Muthyala, President & CEO, Indian Organization for Rare Diseases; said, in 2021, the ministry of health and family welfare drafted the national policy for rare disease treatment. The policy is inadequate to serve the needs of rare disease patients because it is drafted by borrowing the US definition of rare diseases. To have a definition suitable to our country, one must know the prevalence or count of rare disease patients in India. To accomplish this, IORD initiated a pilot project to make an approximate count of rare disease patients with the generous support of the government of Telangana, permitting Accredited Social Health Activist (ASHA) workers to join hands with us. They have first-hand knowledge related to individual health-related matters. Preliminary results are very encouraging and received worldwide attention to adapt similar approaches to determine the prevalence of rare diseases.
Sri G. K. B. Chowdary, Chairman, Jeedimetla Effluent treatment Ltd; said, IORD is an eighteen-year-old organization and in 2014, our former President and beloves Shri APJ Abdul Kalam, initiated the programs of IORD to spread awareness about rare diseases. The people suffering from rare disease are few and far, but the trauma they endure is immense because there is no cure and medicine, available. IORD has taken the responsibility of spreading this awareness, sensitizing the government agencies as well as the industry and NGOs, to bring them together and eventually get a rare disease Act, as is prevalent in USA and other advanced countries, so that pharma and other industries develop products for rare disease patients.
World Rare Disease Day is observed globally on the last day of February (February 28 or February 29 on a leap year) to raise awareness about over 7000 identified rare diseases and the challenges faced by 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 these patients endure rare diseases, which don’t seem to have approved treatments or a cure in the near future. The theme of this year’s World Rare Disease Day is ‘Show Your Stripes and Share Your Colours.’ The Zebra stripes and the colours blue, pink, green and purple signify rare diseases.
The awareness bikeathon and walkathon event is part of a series of year-long activities undertaken by the Indian Organization for Rare Diseases. These activities include facilitating seminars, workshops, rallies, illumination of landmark buildings in rare disease colours and organizing interactive workshops with various rare disease stakeholders and groups.