+91-9666438880
indiaord@gmail.com
IORD – Indian Organization for Rare DiseasesIORD – Indian Organization for Rare DiseasesIORD – Indian Organization for Rare DiseasesIORD – Indian Organization for Rare Diseases
  • Home
  • About Us
    • Management Committee
    • Advisory Board
    • Newsletters
    • Newsletter Subscription
  • Rare Diseases
  • Research
  • Services
  • Donate
  • Gallery
    • Photo Gallery
      • World Rare Disease Day – 2023
      • World Rare Disease Day 2020
    • Video Gallery
      • World Rare Disease Day – 2020
      • World Rare Disease Day – 2019
      • World Rare Disease Day – 2018
  • Blog
  • Contact Us

Blog

Home Articles posted by IORD (Page 4)
This is a transcribed speech of Dr. Vinod K. Paul, Member of the National Institution for Transforming India (NITI) Aayog, on "Manufacturing Drugs for Selected Rare Diseases." He delivered this speech at the World Rare Disease Day 2025 conference, organized by the Indian Organisation for Rare Diseases in Vijayawada, Andhra Pradesh, on February 28, 2025.

Manufacturing Drugs for Selected Rare Diseases: Dr Vinod K Paul

By IORD | IORD Updates, Rare Disease News | 0 comment | 1 March, 2025 | 1

Dr. Vinod K. Paul, Member, NITI Aayog, calls for manufacturing drugs for selected rare diseases, emphasizing affordability, domestic production, and improved patient access.

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 open for IORD’s World Rare Disease Day 2025 conference in Vijayawada, aiming to advance innovation, collaboration, and solutions for rare disease diagnosis, treatment, and public health.

The Indian Organization for Rare Diseases (IORD) and the Ram-Janaki Institute Positive Broadcasting House (RJS PBH) have initiated a 20-day awareness campaign to highlight the challenges faced by individuals with rare diseases. The campaign, inaugurated by Professor (Dr.) Ramayya Muthyala, President and CEO of IORD, aims to raise awareness ahead of World Rare Disease Day on February 28, 2025.

IORD-RJS Launches 20-Day Rare Disease Awareness Campaign

By IORD | Events, IORD Updates, Rare Disease News | 0 comment | 9 February, 2025 | 0

IORD and RJS launched a 20-day rare disease awareness campaign ahead of World Rare Disease Day 2025, promoting education, advocacy, and public engagement through webinars and outreach initiatives.

A webinar titled on the Urgent Need for a Unified Approach to Tackle Rare Diseases in India is being organized jointly by RJS PBH - RJS Positive Media and the Indian Organisation for Rare Diseases (IORD) on February 9 at 11.00 AM.

Join Expert-Led RJS PBH Webinar on Rare Diseases on 9th Feb

By IORD | Events, IORD Updates | 0 comment | 5 February, 2025 | 0

IORD and RJS PBH announce an expert-led webinar on rare diseases, focusing on the urgent need for a unified approach to address challenges in India.

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

Read IORD CEO & President Prof. Ramaiah Muthyala’s webinar address at Federation of Asian Biotech Associations webinar on global rare disease burden, challenges, and need for coordinated action.

The Global Burden of Rare Diseases: Issues and Challenges' was addressed by Hyderabad-based Indian Organization for Rare Diseases founder Prof. Ramaiah Muthyala.

Affordability of drugs for rare diseases a challenge

By IORD | IORD in News, Times of India | 0 comment | 21 December, 2024 | 0

In this news article, IORD CEO & President Prof. Ramaiah Muthyala underscores rare disease drug affordability issues, highlighting healthcare disparities, policy limitations, and restricted access to essential treatments in India.

A webinar organised by the Federation of Asian Biotech Associations-US chapter highlighted the socio-economic and emotional toll on the 70 million Indians affected by rare diseases (RDs)

Webinar Highlights Challenges Presented by Rare Diseases

By IORD | Deccan Chronicle, IORD in News | 0 comment | 21 December, 2024 | 0

A webinar organized by the Federation of Asian Biotech Associations-US chapter highlighted the socio-economic and emotional impact on the 70 million Indians affected by rare diseases (RDs).

The following excerpt is from a news article by Nandita Vijayasimha, published in Pharmabiz on Saturday, December 21, 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.

India should focus on critical health crisis posed by rare diseases: Prof. Ramaiah Muthyala

By IORD | IORD in News, Pharmabiz.com | 0 comment | 21 December, 2024 | 0

IORD CEO and President Prof. Ramaiah Muthyala calls for India to address the critical rare disease crisis, emphasizing urgent policy focus, awareness, and improved healthcare response.

The Delhi High Court has extended the tenure of the National Rare Disease Committee (NRDC) for 5 years, empowering it with a broader mandate to strengthen rare disease management in India.

NRDC Extended for Five Years to Boost Rare Disease Initiatives

By IORD | Uncategorised | 0 comment | 16 December, 2024 | 0

The Delhi High Court has extended the tenure of the National Rare Disease Committee (NRDC) for 5 years, empowering it with a broader mandate to strengthen rare disease management in India.

In a landmark ruling, the Delhi High Court ordered the creation of a ₹974 crore National Fund for Rare Diseases for 2024–26, emphasizing patient-centric policies, expanded treatment access, and funding reforms.

National Fund for Rare Diseases Announced: ₹974 Crore Allocated for 2024–26

By IORD | News, Rare Disease News | 0 comment | 16 December, 2024 | 2

In a landmark ruling, the Delhi High Court ordered the creation of a ₹974 crore National Fund for Rare Diseases for 2024–26, emphasizing patient-centric policies, expanded treatment access, and funding reforms.

23456

Categories

  • ABN Andhra Jyothi
  • ANI
  • Deccan Chronicle
  • Economic Times
  • Eenadu
  • Events
  • IORD in News
  • IORD Updates
  • News
  • Pharmabiz.com
  • Prime9 News
  • Rare Disease News
  • Rare Disease Survivor
  • Sakshi
  • Telangana Today
  • The Hans India
  • The Hindu
  • The Pioneer
  • Times Now
  • Times of India
  • Uncategorised
  • Vaartha
  • World Rare Disease Day 2026

Recent Posts

  • Dr. Anil Kumar Mandal: 40-Year Journey Advancing Care in Congenital Glaucoma
  • World Rare Disease Day 2026: Dr. Ramaiah Muthyala Focuses on Rare Ophthalmic Disorders
  • India: Rare Ophthalmic Disorders Take Centrestage at World Rare Disease Day-2026
  • IORD to Host World Rare Disease Day 2026 Conference Focused on Rare Ophthalmic Conditions
  • Bridging India’s Rare Disease Treatment Gap Through Public-Interest Pharmaceuticals

Archives

  • April 2026
  • March 2026
  • February 2026
  • January 2026
  • November 2025
  • October 2025
  • September 2025
  • August 2025
  • July 2025
  • June 2025
  • May 2025
  • April 2025
  • March 2025
  • February 2025
  • January 2025
  • December 2024
  • November 2024
  • September 2024
  • July 2024
  • June 2024
  • May 2024
  • March 2024
  • February 2024
  • December 2023
  • October 2023
  • July 2023
  • June 2023
  • May 2023
  • April 2023
  • March 2023
  • February 2023
  • January 2023
  • December 2022
  • November 2022
  • October 2022
  • September 2022
  • August 2022
  • June 2022
  • May 2022
  • April 2022
  • March 2022
  • February 2022
  • January 2022
  • December 2021
  • November 2021
  • October 2021
  • September 2021
  • August 2021
  • July 2021
  • May 2021
  • April 2021
  • November 2020
  • March 2020
  • February 2020
  • January 2020
  • February 2019
  • January 2018
  • September 2015

IORD

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.

RARE DISEASES

  • Rare Blood Diseases
  • Rare Heart Diseases
  • Rare Fungal Diseases
  • Rare Kidney Diseases
  • Rare Newborn Diseases
  • more...

SERVICES

  • Research
  • Let's Come Together
  • Partner With Us
  • Volunteers
  • Privacy Policy
  • Sitemap

CONTACT US

Indian Organization For Rare Diseases
Registered Office (India):
Plot No. 397, Road No. 22B, Jubilee Hills, Hyderabad – 500033, Telangana, India.

Phone: +91-9666438880

Email: indiaord@gmail.com

© 2020 Indian Organization For Rare Diseases | All Rights Reserved. Powered By Digital Dynamics
  • Home
  • About Us
    • Management Committee
    • Advisory Board
    • Newsletters
    • Newsletter Subscription
  • Rare Diseases
  • Research
  • Services
  • Donate
  • Gallery
    • Photo Gallery
      • World Rare Disease Day – 2023
      • World Rare Disease Day 2020
    • Video Gallery
      • World Rare Disease Day – 2020
      • World Rare Disease Day – 2019
      • World Rare Disease Day – 2018
  • Blog
  • Contact Us
IORD – Indian Organization for Rare Diseases