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Home Search results for "rare disease advocacy"
Closing Critical Gaps in India's Rare Disease Framework: A Vision from Dr. Ramaiah Muthyala

From Policy to Patients: Addressing Gaps in Rare Disease Care

By IORD | IORD in News, News, Rare Disease News | 0 comment | 13 May, 2025 | 0

The following is an excerpt from a three-part interview series featuring IORD CEO & President Prof. Ramaiah Muthyala. In the first part, he speaks to Health Issues India on rare disease care in India and highlights NPRD’s progress, persistent gaps in diagnosis, treatment, and the need for disease-specific approaches. Read more at healthissuesindia.com   RareRead more

Prof. Ramaiah Muthyala (left, sitting) discussing innovative solutions for rare diseases at the 2025 World Orphan Drug Congress in Boston. With a focus on policy reforms and access to affordable medications, the panel addressed the urgent need for systemic change in rare disease care globally

Prof. Ramaiah Muthyala Calls for Policy Reforms at World Orphan Drug Congress-2025

By IORD | Events, IORD Updates, Rare Disease News | 0 comment | 4 May, 2025 | 0

Prof. Ramaiah Muthyala discussed challenges and solutions for rare disease access at the 2025 World Orphan Drug Congress in Boston. He highlighted the global economic burden of rare diseases and the unique barriers in low- and middle-income countries. Efforts in India to reduce orphan drug costs, including the availability of Hydroxyurea for sickle cell diseaseRead more

Registration is now open for World Rare Disease Day-2025 Conference, organized by the Indian Organisation for Rare Diseases (IORD) at FORTUNE Murali Park, Vijayawada in Andhra Pradesh on 28 February, 2025

Registration is now open for IORD World Rare Disease Day-2025

By IORD | IORD Updates, Rare Disease News | 0 comment | 18 February, 2025 | 0

Registration is now open for World Rare Disease Day-2025 Conference, organized by the Indian Organisation for Rare Diseases (IORD) at FORTUNE Murali Park, Vijayawada in Andhra Pradesh on 28 February, 2025. This significant event aims to advance healthcare innovation, address rare diseases, and strengthen collaborative efforts in public health. To register for the conference, pleaseRead more

The following article is reproduced from an editorial article by Kamal Pratap Singh published in Biotech Express on page 8 in November 2024 based on the webinar ‘The Global Burden of Rare Diseases: Issues and Challenges’ addressed by Prof. Ramaiah Muthyala at the Federation of Asian Biotech Associations (FABA)-US Chapter.

Prof Ramaiah Muthyala Updates on Rare Diseases in India

By IORD | IORD in News, Rare Disease News | 0 comment | 27 January, 2025 | 0

The following is reproduced from an editorial article by Kamal Pratap Singh published in Biotech Express on page 8 in November 2024 based on the webinar ‘The Global Burden of Rare Diseases: Issues and Challenges’ addressed by Prof. Ramaiah Muthyala at the Federation of Asian Biotech Associations (FABA)-US Chapter.   In a ground-breaking webinar hostedRead more

IORD & Rare Diseases in India: Impact, Initiatives & Challenges

IORD & Rare Diseases in India: Impact, Initiatives & Challenges

By IORD | IORD Updates, Rare Disease News | 0 comment | 5 December, 2024 | 0

Rare diseases, though affecting a small percentage of the population, represent a significant public health challenge in India. The Indian Organisation for Rare Diseases (IORD) has been at the forefront of advocating for policies, raising awareness, and improving treatment access. Rare diseases not only lead to the loss of human productivity but also place aRead more

Boosting Rare Disease Advocacy: India Approves National Medical Devices Policy to Drive Growth and Innovation

IORD Advocacy: Rare Diseases get focus in New Medical Devices Policy

By IORD | IORD in News, IORD Updates, News | 0 comment | 6 June, 2023 | 0

When the Union Cabinet, chaired by Prime Minister Shri Narendra Modi, approved the National Medical Devices Policy, 2023 on April 26, it came as a shot in the arm for rare disease advocacy Indian Organisation for Rare Diseases (IORD). This policy aims to promote the growth of the medical devices sector in India and achieveRead more

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Indian Organization For Rare Diseases (IORD), a not-for-profit umbrella organization represents interests of all stakeholders of Rare Diseases in India including individual patients, patient support groups, health policy advocates and health care providers.

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IORD – Indian Organization for Rare Diseases