Organization For Rare Diseases India

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Organization For Rare Diseases India

To empower rare disease patients and their families in India with access to national and international resources and help improve their quality of life

Our Objectives
Rare Diseases Patients Helpline and Helpdesk: ORDI runs a national rare disease hotline (+91 8892 555 000) to hear the needs of rare disease patients. ORDI will setup a dedicated helpdesk with the goal of enabling patients, access to information and resources to guide them through the process of diagnosing and dealing with the rare conditions affecting their health and quality of life. ORDI develops and maintains a public website, a patient portal, organizes awareness campaigns, and an annual rare disease conference in India. Organize sponsored clinics that are at no cost to the rare disease patients by inviting national and international medical and research experts for selected rare diseases. The scope for this is enormous as there are 7000+ rare diseases and 70+ million patients in India. We will identify 5-10 diseases for the first couple years and coordinate clinics for them in metro cities with attendance by surrounding rural patients to the extent possible. Rare disease patient registry: Design, develop, maintain and make available, a registry of rare disease patients in India. Initially, this registry could be developed for a single or a group of rare diseases and eventually replicated to accommodate all rare diseases. This registry would be utilized for identifying patients for free/sponsored clinics, enrollment into clinical trials, broadcast important announcements, maintain patient informed consents to participate in special clinical research programs, etc. Biospecimen repository (bioBank) for rare diseases research: To enable the preservation of and utilization of biospecimens related to rare disease patients in India, ORDI shall provide a biobanking facility and enable access to researchers investigating rare diseases in India. These specimens are shared according to applicable laws and standard operating procedures (SOPs) relevant to human subjects research. Funding program for rare disease researchers in India: At least five competitive research awards based on external review to winning proposals. The biospecimens in the ORDI Biobank and the ORDI patient registry would be made available as resources to the grantees of these awards. ORDI will also catalyze relevant international collaborations for these grantees. For more visit: http://ordindia.in

05/02/2026

Understanding Autism Spectrum Disorder (ASD) early can make a life-changing difference.

Join ORDI India for an informative session on
“Autism Spectrum Disorder: Clinical profile and role of Early Intervention”, where experts will discuss early signs, clinical understanding, and the critical importance of timely intervention in improving outcomes for children with ASD.

🎙 Speaker:
Dr. Prashant R. Utage
Senior Pediatric Neurologist | Director & CEO
Utage Child Development Centre & Umang Autism Centre

🎤 Moderator:
Dr. Anikha Bellad
Faculty Scientist, Institute of Bioinformatics, Bengaluru
Adjunct Faculty, Manipal Academy of Higher Education

📅 Date: 11th February 2026
⏰ Time: 4:00 PM – 5:00 PM IST
📍 Platform: Zoom (Scan QR or use the details below)

Let’s come together to raise awareness, encourage early action, and support families navigating autism spectrum disorders.

💙 Because early understanding leads to better outcomes.

04/02/2026

ORDI and the entire ORDI Team wish a very Happy Birthday to Dr. Pradeep.

Thank you for your unwavering commitment, compassion, and dedication to improving lives within the rare disease community. Your guidance and service continue to inspire hope and make a meaningful difference every day.

May this year bring you good health, happiness, and continued success in all your endeavors. 🌿✨

With warm regards,
ORDI Team

04/02/2026

February is Retinitis Pigmentosa (RP) Awareness Month 💜

Retinitis Pigmentosa is a rare genetic eye condition that gradually affects vision—but it never defines the strength, resilience, or courage of those living with it.

This month, we stand together with individuals and families navigating RP. Through awareness, support, and collective action, we can help ensure no one walks this journey alone.

Rare, but never alone.
Let’s spread awareness, encourage early diagnosis, and support the rare disease community—today and always.

📞 +91 8892 555 000
🌐 www.ordindia.in
| www.savemylife.in

💜

02/02/2026

Every step tells a story.
Every step stands for someone living with a rare disease.
Run for awareness. Run for hope. Run for lasting care.
Be part of the movement.

Sign Up Now: https://registration.racefor7.com/

📅 22 February 2026 | ⏰ 6:00 AM
🏃 7 KM & 10 KM | Physical + Virtual

02/02/2026

💜 February is Retinitis Pigmentosa (RP) Awareness Month 💜

Retinitis Pigmentosa (RP) is a rare, genetic eye disorder that gradually affects the retina—the light-sensitive tissue at the back of the eye—leading to vision loss over time.

Early awareness, timely diagnosis, and the right support can help individuals and families navigate this journey with hope and dignity.

This month, let’s come together to
✨ raise awareness
✨ support those living with RP
✨ advocate for better care, research, and inclusion

Every shared post helps shine a light for someone living in the dark.

📞 +91 8892 555 000
🌐 www.ordindia.in
| www.savemylife.in

30/01/2026

🧬 ORDI – Rare Info Series 🧬

Join us for an insightful session on
“Preventive Strategies for Rare Diseases”

🎙 Speaker:
Dr. Shagun Aggarwal
Professor & Head, Department of Medical Genetics,
Nizam’s Institute of Medical Sciences (NIMS), Hyderabad
Adjunct Scientist, CDFD Hyderabad

🎤 Moderator:
Ms. Neeraja Reddy Mallela
Vice President – Genetic Counseling, Mapmygenome

📅 Date: 04 February 2026
⏰ Time: 4:00 PM – 5:00 PM IST
💻 Platform: Zoom

📌 Zoom ID: 895 7399 2257
🔐 Passcode: 8892555000

Let’s come together to understand how early awareness, screening, and preventive approaches can make a difference in the rare disease journey.

📞 Helpline: 8892 555 000
🌐 Website: www.ordindia.in

27/01/2026

ORDI proudly celebrates a moment of immense pride and inspiration. 🌟

We extend our heartfelt congratulations to Dr. Thangaraj on being conferred the Padma Shri, one of India’s highest civilian honors, for his exceptional and transformative contributions to Human Genetics.

His pioneering work has not only advanced scientific understanding but has also brought hope and direction to countless individuals and families affected by rare diseases. This prestigious recognition is a true testament to his dedication, vision, and lifelong commitment to science and society.

We are honoured to celebrate this well-deserved achievement and his continued impact on the future of healthcare and genetics. 🙏✨

27/01/2026

A moment of pride and celebration for the healthcare and rare disease community. 🌟

ORDI extends its heartiest congratulations to Dr. Suresh Hanagwadi on being conferred the prestigious Padma Shri Award, in recognition of his extraordinary contributions to medicine and society.

This well-deserved honor stands as a testament to his unwavering commitment, compassionate service, and lifelong dedication to excellence in healthcare. His work has touched countless lives and continues to inspire generations of medical professionals and communities alike.

We proudly celebrate this remarkable achievement and his lasting impact on society. 🙏✨

27/01/2026

Run with purpose. Run for impact. 🏃‍♂️🏃‍♀️

ORDI presents the 11th Edition of Race for 7 —
Run for Rare. Run for Lasting Care.

Join us for a 10 KM & 7 KM timed run to support the rare disease community and help create awareness, access, and hope for thousands of lives. Every step you take makes a difference.

📍 St. Joseph Indian High School Ground, Opp. UB City, Bengaluru
📅 22nd February 2026
⏰ 6:00 AM

🎽 T-shirt | 📜 E-Certificate | 🏅 Medal | 🍽 Breakfast for all participants

🔗 Register now: registration.racefor7.com

Let’s come together and run for a cause that truly matters. 💙

27/01/2026

Warm birthday wishes to Bala Sir 🎉🎂

May this year bring you good health, happiness, and continued success in all that you do. Your dedication and positive spirit are truly appreciated, and we are grateful for the inspiration you share through your work.

Wishing you a joyful year ahead filled with smiles and meaningful moments. ✨🙏

26/01/2026

𝐇𝐚𝐩𝐩𝐲 𝐑𝐞𝐩𝐮𝐛𝐥𝐢𝐜 𝐃𝐚𝐲 𝟐𝟎𝟐𝟔

22/01/2026

Early diagnosis can save lives — especially in rare metabolic conditions.

Join ORD India’s Rare Info Series for an expert-led session on Early Diagnosis and Treatment of Urea Cycle Disorders, with a special focus on treatment options available in India.

🎙 Speaker:
Dr. Gauri Krishna
FRCPCH (UK), MRCPCH (UK), MPhil (Medical Genetics, Cambridge)
Consultant – Paediatric Metabolic & Clinical Genetics

🎤 Moderator:
Dr. Krishna Sai Reddy
Consultant Medical Geneticist & Genetic Counselor (CGC)

This session aims to raise awareness among clinicians, caregivers, and the wider community about timely diagnosis, management pathways, and improving outcomes for individuals affected by urea cycle disorders.

📅 Date: 28th January 2026
⏰ Time: 4:00 PM – 5:00 PM IST
📍 Platform: Zoom (Scan QR code or use details below)

🔗 Zoom ID: 813 3970 0569
🔐 Passcode: 8892555000

🌐 www.ordindia.in

📞 8892 555 000

Let’s come together to strengthen knowledge, encourage early action, and support the rare disease community.

Address

# 621, 4th Main, 10th A Cross, Mahalakshmipuram
Bangalore
560086

Website

https://ordindia.in/

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