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

07/01/2026

Save the date for a run that truly matters.
A run where every step supports rare lives and lasting care.
ORDI’s 11th Run for 7 is coming this February.

Registrations are now open.
📅 22 February 2026 | ⏰ 6:00 AM
🏃 7 KM & 10 KM | Physical + Virtual

Be there. Be counted. Be the reason care continues.

06/01/2026

ORDI proudly congratulates Dr. Dipanjana Dutta on being elected as Secretary, Society of Fetal Medicine – Bengal Chapter.

As a Senior Genetic Counsellor and West Bengal Coordinator, Dr. Dipanjana Dutta has consistently demonstrated dedication, expertise, and compassionate leadership in the field of fetal medicine and genetic counselling.

We wish her continued success in service, leadership, and her commitment to advancing maternal and fetal health.

Warm congratulations and best wishes for this new responsibility. 🌿

05/01/2026

January is Moebius Syndrome Awareness Month 💜

A still face does not mean silent emotions.
People living with Moebius Syndrome experience joy, curiosity, fear, and love—fully and deeply. Their feelings are real, even when expressions are not visible.

This month, let us look beyond the face and listen with empathy, understanding, and compassion. Awareness begins when we learn to see with the heart.

Together, let’s stand for inclusion, dignity, and acceptance for every rare life.

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

05/01/2026

Some runs leave you breathless.
Some runs leave a mark.
This one does both.
Because when you run for rare diseases, the impact doesn’t end at the finish line, it lasts.

Stay tuned for a run that stands for rare and lasting care.

03/01/2026

ORDI – Organization for Rare Diseases India invites you to an important session from our Rare Info Series focusing on the genetic and health implications of consanguineous marriages.

🧬 Topic: Close Ties, Hidden Risks: Understanding Consanguineous Marriages
🎙️ Speaker: Dr. Janani Dhakshina Moorthy, Founder & Geneticist, GeneAura Pvt Ltd
🎤 Moderator: Ms. Akshata Jain, Consultant Genetic Counselor & Genome Analyst
📅 Date: 07 January 2026
⏰ Time: 4:00 PM – 5:00 PM IST
💻 Platform: Zoom

This session aims to create awareness, address myths, and highlight the importance of genetic counseling in reducing the risk of inherited disorders.
🔗 Join us and be part of an informed conversation that can make a difference for families and future generations.

📞 Contact: 8892 555 000
🌐 www.ordindia.in

02/01/2026

ORDI proudly congratulates Sri Ram Kumar on becoming a Chartered Accountant — a milestone achieved through unwavering commitment and quiet perseverance.

His journey stands as a powerful reminder that consistency, focus, and determination can shape remarkable outcomes. Every step taken with purpose leads closer to one’s dreams.

May this achievement mark the beginning of many more successes ahead.
Wishing him continued growth, strength, and inspiration in all his future endeavours. 🌟

02/01/2026

✨ ORDI Rare Clinic – Care Beyond Rarity ✨

At ORDI Rare Clinic, we bring together a dedicated team of specialists to support individuals and families living with rare diseases. Our multidisciplinary approach ensures timely diagnosis, compassionate care, and continuous guidance—all under one roof.

👩‍⚕️ Our Specialist Team Includes:
Pediatricians, Neurologists & Pediatric Neurologists, Psychiatrists, Neuroscientists, Physiotherapists, Genetic Counselors, Clinical Dietitians, and Pharmacists — working together for holistic care.

📍 Location:
Organization for Rare Diseases India (ORDI)
Mahalakshmipuram, Bengaluru
(Near Rajajinagar Metro Station)

📞 For Appointments:
+91 88925 55000

Because every rare journey deserves expert care, understanding, and hope. 💙

31/12/2025

𝑯𝒂𝒑𝒑𝒚 𝑵𝒆𝒘 𝒀𝒆𝒂𝒓 𝟮𝟬𝟮𝟲 🥳🎉

26/12/2025

🧬 RARE INFO SERIES – Session 41

👶 New-born Screening: The First Line of Defence Against Rare Diseases

Early detection can change lives. Join us for an insightful session highlighting the crucial role of new-born screening in identifying rare diseases at the earliest stage and improving long-term outcomes for children.

🎙 Speaker:
Dr. Atanu Kumar Dutta
Additional Professor, Department of Biochemistry
AIIMS, Kalyani, West Bengal

🎤 Moderator:
Dr. Emili Banerjee Bhattacharjee
Senior Genetic Counsellor | BGCI Certified
HSSC Level II Certified Genetic Counselling Trainer

📅 Date: 31st December 2025
⏰ Time: 4:00 PM – 5:00 PM IST
💻 Platform: Zoom

🔑 Zoom ID: 836 6519 4388
🔐 Passcode: 8892555000

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

Let’s come together to spread awareness and strengthen early diagnosis for rare diseases.
🔁 Share to support informed beginnings for every child.

25/12/2025

𝐌𝐞𝐫𝐫𝐲 𝐂𝐡𝐫𝐢𝐬𝐭𝐦𝐚𝐬 𝟐𝟎𝟐𝟓🎄🎅 ☃️
Wishing love, laughter, and festive magic this season.

22/12/2025

Hereditary Angioedema (HAE) is rare—but awareness can change lives.

Join ORDI – Organization for Rare Diseases India for a special Rare Info Series session on
“Hereditary Angioedema Uncovered: Insights and Innovations for Better Living.”

🎙 Speaker:
Dr. Sowmya Nagarajan
Paediatrician, Allergist & Immunologist
Sanjeevini Specialist Clinic & Mallige Hospitals, Bengaluru

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

📅 24th December 2025
⏰ 4:00 PM – 5:00 PM IST
📍 Online | Zoom

This session will help patients, caregivers, and healthcare professionals better understand HAE, its challenges, and the latest innovations improving quality of life.

🔗 Join via Zoom
🆔 Zoom ID: 869 9237 8895
🔐 Passcode: 8892555000

📞 For queries: 8892 555 000
🌐 Visit: www.ordindia.in

Let’s learn, share, and strengthen the rare disease community together. 💙

20/12/2025

From bustling cities to the quiet corners of our villages, rare diseases touch lives everywhere.
Yet many remain unseen, undiagnosed, and unheard.

Awareness bridges this gap.
It leads to earlier diagnosis, better care, and stronger support for families across India.

Together, we can ensure that no life is overlooked just because a condition is rare.
Let’s make awareness reach every home. 💙

Address

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

Website

https://ordindia.in/

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