It was a pleasant morning and the sun was barely up on the Sunday of February 26th when cyclists from all over the city gathered at the starting line of the bikeathon for rare disease awareness at Necklace Road, Hyderabad.
The participants, young and old, amateur and professional, had all come together for a common cause, with the shared goal of making a difference in the lives of those affected by rare diseases.
Driven by the desire to become the voice of 300 million affected people worldwide on World Rare Disease Day-2023, the cyclists set off with a sense of purpose and determination, cycling through the scenic 10-km route on the Necklace Road as the spectators cheered them on. The event had attracted a large turnout, with people lining the streets to show their support for the cause.
The 10-km Bikeathon, followed by a 5-km Walkathon was flagged off by Shri Jayesh Ranjan (IAS), Principal Secretary to the Government of Telangana, Industries & Commerce (I&C) Department, & Information Technology, Electronics, and Communications (ITE&C) Department on Sunday morning at People’s Plaza, Necklace Road.
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 the 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).
Event Highlights:
- The youngest Bikeathon participant was Korukonda lyosha, aged only eight years.
- The oldest walkathon participant was Subhash Pande, aged 76 years
- Both were felicitated at the Bikeathon │ Walkathon │ For Rare
- Shri Jayesh Ranjan (IAS), Principal Secretary, I&C, ITE&C flagged off the bikeathon & walkathon
- The theme for this year is ‘Show Your Stripes and Share Your Colours
There were a few other young cyclists who peddled for the rare disease cause. They include Aadhyan Krishna kukudala, 9 years, P sai Harini, 13 years and Mohammad Khan, 14 years.
They weren’t alone as several survivors and rare disease patients suffering from these rare ailments, joined along with their kin.
World Rare Disease Day
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 a readymade 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.
The IORD’s Bikeathon │ Walkathon │ For Rare was widely covered in the print, digital and electronic media.
Shri Jayesh Ranjan: Chief Guest Address
In his address, Chief Guest Shri Jayesh Ranjan congratulated the Indian Organization for Rare Diseasesfor focusing on this very important aspect of healthcare. Recently, at an international event called Bio Asia in Hyderabad, we discussed this issue with some of the companies that 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 how they could bring down the cost of such medication. As Dr Ramaiah Muthyala garu, discussed, there are precedents in other countries on how to take care of subsidizing and finding other alternative financing methods for the medication of these kinds of rare diseases. We discussed with Novartis the company itself absorbing some of the costs, and discussions are happening, hopefully, we could arrive at some midway to provide a more structured kind of 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 a 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 of the 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. They evinced keen interest to adopt similar approaches to determine the prevalence of rare diseases.
Sri G. K. B. Chowdary, Chairman of Jeedimetla Effluent treatment Ltd said IORD is an 18-year-old organization and in 2014, our former President and beloved Shri APJ Abdul Kalam, initiated the programs of IORD to spread awareness about rare diseases. The people suffering from these rare diseases are few and far, but the trauma they endure is immense because there is no cure or 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 the USA and other advanced countries so that pharma and other industries develop products for rare disease patients.
About Rare Diseases:
Rare Diseases currently affect 5% of the World’s population. The number of people enduring a rare disease is equivalent to the population of the world’s 3rd largest-populated country. 72% of the Rare Diseases are genetic in nature, while others are the result of bacterial or viral infections, allergies, environmental causes or rare cancers. 70% of genetic Rare Diseases start in childhood. There are an estimated 200 rare cancers and 1 in 5 cancers is Rare.
Most of the 7000 rare diseases can be grouped under Rare Autoimmune Disorders, Rare Blood Diseases, Rare Bacterial Infections, Rare Heart Diseases, Rare Neurological Disorders, Rare Cancers, Rare Musculoskeletal Diseases, Rare Genetic Disorders, Rare Connective Tissue Disorders, Rare Newborn Diseases and several more.
For event photographs: Click here
