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

🌍 August 24th is Familial Hypercholesterolemia (FH) Awareness Day πŸ’™Did you know?βœ… 1 in 250 people worldwide are born wit...
24/08/2025

🌍 August 24th is Familial Hypercholesterolemia (FH) Awareness Day πŸ’™

Did you know?
βœ… 1 in 250 people worldwide are born with FH
βœ… FH causes dangerously high cholesterol from birth, leading to early heart disease
βœ… Over 90% of people with FH remain undiagnosed
βœ… Early testing, lifestyle changes, and treatment can prevent heart attacks & strokes

If high cholesterol runs in your family, get tested early and help spread the word. Together, we can save lives! πŸ’š

🌬️ RARE INFO SERIES | Respiratory Care 🌬️Join us for an insightful session on:β€œBreathing Easier: Identifying and Prevent...
22/08/2025

🌬️ RARE INFO SERIES | Respiratory Care 🌬️

Join us for an insightful session on:
β€œBreathing Easier: Identifying and Preventing Lung Infection”

πŸ—£οΈ Speaker
πŸ‘©β€βš•οΈ Dr. Indu Khosla
Consultant Pediatric Pulmonologist, SRCC Hospital, Mumbai

🎀 Moderators
πŸ‘¨β€βš•οΈ Dr. Javeed Iqbal – Professor, Pediatrics, SKIMS, Srinagar
πŸ‘¨β€βš•οΈ Dr. Sanjay Bafna, MD – Consultant Pediatric Pulmonologist, Bhartiya Vidyapeeth Medical College & Jehangir Hospital, Pune

πŸ“… Date: 23rd August 2025
πŸ•• Time: 06:00 PM – 07:00 PM IST
πŸ“ Platform: Zoom

πŸ”— Join via Zoom
Zoom ID: 896 2159 0923
Passcode: 8892555000

πŸ‘‰ Don’t miss this opportunity to learn from experts on how to safeguard respiratory health and prevent lung infections.

πŸ“ž For details, call: 8892 555 000
🌐 Visit: www.ordindia.in

🌟 A big milestone for the Rare Disease community! 🌟We extend our heartfelt thanks to the Ministry of Health & Family Wel...
20/08/2025

🌟 A big milestone for the Rare Disease community! 🌟

We extend our heartfelt thanks to the Ministry of Health & Family Welfare for designating AIIMS Patna as a Centre of Excellence (CoE) for Rare Diseases. πŸ’™

This recognition means better access to advanced care, research, and treatment for rare disease patients in Bihar and beyond β€” bringing hope, progress, and brighter tomorrows. ✨

🌍 World Malan Syndrome Awareness Day | August 19th, 2025 🌍Today, we unite to shed light on Malan Syndrome, a rare geneti...
19/08/2025

🌍 World Malan Syndrome Awareness Day | August 19th, 2025 🌍

Today, we unite to shed light on Malan Syndrome, a rare genetic condition that impacts growth, development, and overall health.

πŸ’™ Every voice matters in making the invisible visible.
πŸ’™ Every story shared helps reduce stigma.
πŸ’™ Every effort brings us closer to better support, care, and research.

Let us come together to create awareness, spread hope, and stand in solidarity with individuals and families affected by Malan Syndrome.

πŸ”Ή Awareness brings acceptance. Acceptance brings change. πŸ”Ή

✨🌸 π‘―π’‚π’‘π’‘π’š π‘²π’“π’Šπ’”π’‰π’π’‚ π‘±π’‚π’π’Žπ’‚π’”π’‰π’•π’‚π’Žπ’Š 2025! 🌸✨
16/08/2025

✨🌸 π‘―π’‚π’‘π’‘π’š π‘²π’“π’Šπ’”π’‰π’π’‚ π‘±π’‚π’π’Žπ’‚π’”π’‰π’•π’‚π’Žπ’Š 2025! 🌸✨

14/08/2025
🟣 August is SMA Awareness MonthEvery Movement Matters πŸ’œFor individuals living with Spinal Muscular Atrophy (SMA), even t...
14/08/2025

🟣 August is SMA Awareness Month
Every Movement Matters πŸ’œ
For individuals living with Spinal Muscular Atrophy (SMA), even the smallest actionsβ€”like lifting a finger or holding up their headβ€”are powerful victories.

Let’s raise awareness, support those living with SMA, and celebrate every milestone with compassion and pride. Together, we can make a difference! πŸ’ͺπŸΌπŸ’œ

πŸ”¬ Hope Through ResearchIn just a decade, treatment for Spinal Muscular Atrophy (SMA) has seen groundbreaking progress β€” ...
12/08/2025

πŸ”¬ Hope Through Research
In just a decade, treatment for Spinal Muscular Atrophy (SMA) has seen groundbreaking progress β€” offering real hope to patients and families worldwide.

From gene therapy to SMN-enhancing drugs and dedicated physiotherapy, science is changing the future of SMA care. πŸ’œ

This SMA Awareness Month, we celebrate the power of research and innovation β€” and the brighter tomorrow it brings for those living with SMA.

Let’s continue to support research, raise awareness, and fuel hope.
πŸ“ž +91 8892 555 000
🌐 www.ordindia.in | www.savemylife.in

πŸ’œ Support the Caregivers πŸ’œBehind every SMA warrior is a caregiver β€” a parent, sibling, friend, or health professional β€” ...
11/08/2025

πŸ’œ Support the Caregivers πŸ’œ
Behind every SMA warrior is a caregiver β€” a parent, sibling, friend, or health professional β€” whose strength, patience, and love never waver.

This SMA Awareness Month, we honor these everyday heroes who provide comfort, care, and hope in the face of adversity. 🌟
Your dedication makes all the difference.

Let’s raise awareness not just for those living with SMA, but also for those who stand beside them every step of the way.

πŸ“ž +91 8892 555 000
🌐 www.ordindia.in | www.savemylife.in

🧬 Genetics and SMA: Understanding the InheritanceSpinal Muscular Atrophy (SMA) is inherited in an autosomal recessive pa...
10/08/2025

🧬 Genetics and SMA: Understanding the Inheritance
Spinal Muscular Atrophy (SMA) is inherited in an autosomal recessive pattern. This means that both parents must carry the faulty gene β€” even if they don’t show any symptoms β€” for their child to be affected.

Raising awareness about carrier status and genetic testing is key to early diagnosis, prevention, and informed family planning.

πŸ’œ Knowledge can empower families.
Let’s spread awareness this SMA Awareness Month and advocate for accessible genetic testing.

πŸ“ž +91 8892 555 000
🌐 www.ordindia.in | www.savemylife.in

π‡πšπ©π©π² π‘πšπ€π¬π‘πš 𝐁𝐚𝐧𝐝𝐑𝐚𝐧 πŸπŸŽπŸπŸ“!
09/08/2025

π‡πšπ©π©π² π‘πšπ€π¬π‘πš 𝐁𝐚𝐧𝐝𝐑𝐚𝐧 πŸπŸŽπŸπŸ“!

π‡πšπ©π©π² π•πšπ«πšπ¦πšπ‘πšπ₯𝐚𝐀𝐬𝐑𝐦𝐒 πŸπŸŽπŸπŸ“!
08/08/2025

π‡πšπ©π©π² π•πšπ«πšπ¦πšπ‘πšπ₯𝐚𝐀𝐬𝐑𝐦𝐒 πŸπŸŽπŸπŸ“!

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