Organization For Rare Diseases India

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

April is Fabry Disease Awareness Month — a reminder that this condition is more than just a genetic disorder.It impacts ...
05/04/2026

April is Fabry Disease Awareness Month — a reminder that this condition is more than just a genetic disorder.

It impacts real lives—affecting childhood, daily comfort, and overall well-being. From persistent pain to constant fatigue, even simple routines can become challenging for those living with Fabry Disease.

Awareness is the first step toward change. Early diagnosis and timely care can truly transform lives.

Early care changes the story.

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

April marks Fabry Disease Awareness Month — a time to shed light on a condition that often goes unnoticed for years.Many...
04/04/2026

April marks Fabry Disease Awareness Month — a time to shed light on a condition that often goes unnoticed for years.

Many individuals live 10–15 years without a diagnosis, not because the symptoms aren’t present, but because they are often misunderstood or overlooked. Early recognition can make a life-changing difference.

Let’s raise awareness, encourage timely testing, and support those living with rare diseases. Because every diagnosis delayed is a life impacted.

Think rare. Test early.

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

Fabry Disease is a rare genetic condition that often goes unnoticed due to its vague and easily ignored symptoms like bu...
02/04/2026

Fabry Disease is a rare genetic condition that often goes unnoticed due to its vague and easily ignored symptoms like burning sensations in hands and feet, tingling, digestive issues, and constant fatigue.

Early recognition can make a life-changing difference. Don’t ignore persistent symptoms—awareness can prevent delayed diagnosis and complications.

Let’s come together to spread knowledge, support those affected, and encourage timely medical care.

Recognize. Understand. Act.

💜 Pfeiffer Syndrome Awareness DayNot every condition is visible.Not every struggle is understood.✨ Early care can change...
30/03/2026

💜 Pfeiffer Syndrome Awareness Day

Not every condition is visible.
Not every struggle is understood.

✨ Early care can change lives.
✨ Awareness can build acceptance.

See beyond the condition. Support the journey.

March marks Alport Syndrome Awareness Month — a time to highlight the importance of early detection and family history.D...
29/03/2026

March marks Alport Syndrome Awareness Month — a time to highlight the importance of early detection and family history.

Did you know?
Alport Syndrome is a genetic condition that often runs in families and can affect the kidneys, hearing, and vision.

If you notice:
✔️ Kidney-related issues at a young age
✔️ Hearing loss in the family
✔️ A history of similar conditions

It’s important to consult a healthcare professional early.

Awareness today can lead to better care and outcomes tomorrow.

March is Alport Syndrome Awareness Month — raising awareness about a rare condition that affects multiple vital organs.A...
28/03/2026

March is Alport Syndrome Awareness Month — raising awareness about a rare condition that affects multiple vital organs.

Alport Syndrome primarily impacts the kidneys, hearing, and sometimes vision due to genetic changes affecting essential proteins.

Key things to know:
✔️ It is a hereditary condition that can run in families
✔️ Early signs may include kidney issues or hearing loss
✔️ Timely diagnosis can help slow progression and improve quality of life

Early awareness leads to better management and healthier outcomes.

Let’s spread knowledge and support those affected.

🌿 Live Life to the Fullest… with AyurvedaJoin us for an insightful session from ORDI’s Rare Info Series, where tradition...
27/03/2026

🌿 Live Life to the Fullest… with Ayurveda

Join us for an insightful session from ORDI’s Rare Info Series, where traditional wisdom meets holistic well-being. Discover how Ayurveda can support a balanced, healthier life.

👩‍⚕️ Speaker: Dr. Shubhamangala Acharya
👩‍⚕️ Moderator: Dr. Sarvamangala Shirol

🗓 Date: 01 April 2026
⏰ Time: 4:00 PM – 5:00 PM IST
💻 Platform: Zoom

📌 Enhance your understanding of holistic health and wellness through expert guidance.

🔗 Scan the QR code or use the details provided to join the session.

🧠 Epilepsy & Mass Screening Camp | ಫಿಟ್ಸ್ ರೋಗ / ಅಪಸ್ಮಾರ ತಪಾಸಣಾ ಶಿಬಿರThe Organization for Rare Diseases India (ORDI) in c...
27/03/2026

🧠 Epilepsy & Mass Screening Camp | ಫಿಟ್ಸ್ ರೋಗ / ಅಪಸ್ಮಾರ ತಪಾಸಣಾ ಶಿಬಿರ

The Organization for Rare Diseases India (ORDI) in collaboration with Sri SBS Ayurvedic Medical College & Hospital is conducting a special screening camp for neurological, developmental, and genetic conditions.

Organization for Rare Diseases India (ORDI) ಹಾಗೂ Sri SBS Ayurvedic Medical College & Hospital ವತಿಯಿಂದ ವಿಶೇಷ ತಪಾಸಣಾ ಶಿಬಿರ ಆಯೋಜಿಸಲಾಗಿದೆ.

👶 If your child has seizures, developmental delays, learning difficulties, or unusual symptoms — this camp is highly recommended.
👶 ನಿಮ್ಮ ಮಕ್ಕಳಲ್ಲಿ ಫಿಟ್ಸ್, ಬೆಳವಣಿಗೆಯಲ್ಲಿ ವಿಳಂಬ, ಕಲಿಕೆಯ ಸಮಸ್ಯೆಗಳು ಅಥವಾ ಇತರೆ ಲಕ್ಷಣಗಳಿದ್ದರೆ — ಈ ಶಿಬಿರದಲ್ಲಿ ಭಾಗವಹಿಸಿ.

👨‍⚕️ Specialists Available | ಲಭ್ಯವಿರುವ ತಜ್ಞರು:
Neurologists | Pediatricians | Genetic Counselors
ನರರೋಗ ತಜ್ಞರು | ಮಕ್ಕಳ ವೈದ್ಯರು | ಅನುವಂಶಿಕ ಸಲಹೆಗಾರರು

📅 Date | ದಿನಾಂಕ: Sunday, 3rd May 2026
⏰ Time | ಸಮಯ: 9:00 AM – 2:00 PM
📍 Venue | ಸ್ಥಳ: Sri SBS Ayurvedic Medical College & Hospital, Mundargi

📞 Register Now | ನೋಂದಣಿ: 8892555000
🌐 www.ordindia.in

👉 Early diagnosis can improve treatment outcomes and quality of life.
👉 ಬೇಗ ಪತ್ತೆ ಹಚ್ಚಿದರೆ ಉತ್ತಮ ಚಿಕಿತ್ಸೆ ಸಾಧ್ಯ!

Kindly register in advance | ದಯವಿಟ್ಟು ಮುಂಚಿತವಾಗಿ ನೋಂದಾಯಿಸಿ

#ಆರೋಗ್ಯಶಿಬಿರ #ಮಕ್ಕಳಆರೋಗ್ಯ

💜 Purple Day for Epilepsy AwarenessEpilepsy affects nearly 50 million people worldwide, yet it continues to be misunders...
26/03/2026

💜 Purple Day for Epilepsy Awareness

Epilepsy affects nearly 50 million people worldwide, yet it continues to be misunderstood and stigmatized.

It is important to remember — epilepsy is not contagious and not a mental illness. It is a neurological condition that, with the right diagnosis and treatment, can be effectively managed. In fact, up to 70% of individuals with epilepsy can live seizure-free.

✨ Awareness leads to acceptance.
✨ Acceptance leads to support.
✨ Support changes lives.

Let’s stand together to break the stigma, spread knowledge, and support every epilepsy warrior.

💜

𝐇𝐚𝐩𝐩𝐲 𝐑𝐚𝐦 𝐍𝐚𝐯𝐚𝐦𝐢
26/03/2026

𝐇𝐚𝐩𝐩𝐲 𝐑𝐚𝐦 𝐍𝐚𝐯𝐚𝐦𝐢

Celebrating a remarkable milestone in public health and medical genetics ✨Heartiest congratulations to Dr. Seema Kapoor,...
26/03/2026

Celebrating a remarkable milestone in public health and medical genetics ✨

Heartiest congratulations to Dr. Seema Kapoor, Professor of Excellence (Medical Genetics), Maulana Azad Medical College & Lok Nayak Hospital, New Delhi, for her visionary leadership in conceptualising and establishing the ANMOL Programme.

An impactful initiative by the Delhi Government, ANMOL is transforming newborn screening across India—ensuring early detection, timely intervention, and a healthier future for thousands of newborns.

Your dedication continues to inspire progress and hope in healthcare. 💙

March is dedicated to raising awareness about Malignant Hyperthermia — a rare but life-threatening condition triggered b...
25/03/2026

March is dedicated to raising awareness about Malignant Hyperthermia — a rare but life-threatening condition triggered by certain anesthesia medications.

This awareness month is a reminder that early recognition, proper monitoring, and timely emergency care can save lives. With the right precautions, patients can safely undergo surgical procedures.

Let’s work together to:
✔️ Spread awareness among patients and healthcare providers
✔️ Encourage pre-surgical screening and family history checks
✔️ Promote preparedness in operation theatres

Because informed care leads to safer outcomes.

Address

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

Website

Alerts

Be the first to know and let us send you an email when Organization For Rare Diseases India posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Organization For Rare Diseases India:

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram