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Cycle For Rare

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    World Rare Disease Day 2023

    Cycle For Rare

    By IORD | IORD in News, IORD Updates, News, Rare Disease News | 0 comment | 18 February, 2023 | 1

    Join us to be the voice of 300 million affected people worldwide on World Rare Disease Day-2023. The not-for-profit Indian Organization for Rare Diseases (IORD) is excited to invite you all to an awareness bikeathon and walkathon being organised at the Necklace Road, Hyderabad on 26th February at 6.30 AM on Sunday. 

    Please register for the event by filling out this Registration FORM. 

    The awareness bikeathon and walkathon event is part of a series of year-long activities undertaken by IORD, a national advocacy organisation for rare diseases working for the cause for more than 15 years. They include seminars, workshops, rallies, illumination of landmark buildings in rare disease colours, interactive workshops with media by rare disease experts, organizing informative webinars with rare disease experts for different stakeholders and groups.

    Every year, World Rare Disease Day is observed on the last day of February (28th February) to raise awareness about the issues of over 300 million people worldwide including 90 million Indians living with a rare disease, most of them without a cure. 

    In most countries, Rare Disease patients have to struggle for equitable access to diagnosis, healthcare, social care and opportunity all through their life.

    Let’s join hands for the cause as

    –        Rare Disease currently affects 5% of the Worldwide population

    –        Collectively the number of populations living with a rare disease is equivalent to the population of the world’s 3rd largest-populated country

    –        There are about 7000+ identified rare diseases

    –        72% of the Rare Diseases are genetic in nature while others are the result of infections, bacterial or viral, allergies, environmental causes or are rare cancers

    –        70% of genetic Rare Diseases start in childhood

    –        There are an estimated 200 rare cancers

    –        1 in 5 cancers is Rare

    –        The 5-year survival rate is lower for rare cancer than those diagnosed with a common cancer

    If you love cycling or would like to walk for the rare disease community, please join the awareness bikeathon/walkathon event on Sunday, 26th February at Necklace Road.

    Note: Participants joining the world rare disease day awareness bikeathon have to bring their own cycle. T-shirts, certificates & refreshments for cyclists are limited to the first 100 registrations only. Those under the age of 16 on the event day, must be accompanied by an adult. 

    The bikeathon/walkathon event is being supported by the Government of Telangana and the Jeedimetla Effluent Treatment Limited (JETL). The event partners are KNR Cycling Events, Helping Hand Foundation and Totem Advertising & PR Pvt Ltd.

    Registration Form: Click Here

    Event Venue: People’s Plaza, Necklace Road, Hyderabad

    Time: 6.00 AM

    Contact us at 9666438880 or indiaord@gmail.com

    Bikeathon participants with queries may

    Contact 9701100700 or knrcyclingevents@gmail.com

    Bikeathon for Rare Disease, cycle for rare, India Rare Disease Awareness Rally, Indian Organisation For Rare Diseases, Rare Disease Day India, Rare Disease Policy in India, walkathon for rare disease, World Rare Disease Day, World Rare Disease Day 2023

    IORD

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    • 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.

      Cycle For Rare: IORD’s Bikeathon, Walkathon for Rare Disease Draws Huge Response

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      The youngest Bikeathon participant was Korukonda lyosha, aged only eight years, while the oldest walkathon participant was Subhash Pande, aged 76 years at IORD’s Bikeathon │ Walkathon │ For Rare

    • The following excerpt is from a Times of India news story dated June 23, 2024, discussing the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD.

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      The following excerpt is from a Times of India news story dated June 23, 2024, discussing the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD.  HYDERABAD: Though IndiaRead more

    • Rare disease centers of excellence utilized only 48.7% of the allotted funds in the last three years

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    • Introductory speech made by IORD CEO & President Prof Ramaiah Muthyala at World Rare Disease Day-2024 conference organized by IORD at IMA Hall, Khammam on March 3.

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