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

🌼 Redefining Potential this October – Down Syndrome Awareness Month 💛People with Down Syndrome don’t need sympathy — the...
17/10/2025

🌼 Redefining Potential this October – Down Syndrome Awareness Month 💛

People with Down Syndrome don’t need sympathy — they need opportunity.
With early support, education, and inclusion, they can thrive in classrooms, workplaces, and communities. Let’s move beyond outdated perceptions and embrace understanding, respect, and equality.

Together, let’s build a world where every individual’s potential shines bright. ✨

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

🌟 October is Down Syndrome Awareness Month! 💛💙Every person with Down Syndrome adds a unique story, strength, and spark t...
16/10/2025

🌟 October is Down Syndrome Awareness Month! 💛💙
Every person with Down Syndrome adds a unique story, strength, and spark to our world. It’s time to celebrate their individuality and shift the conversation from “disability” to “possibility.”

Let’s spread love, acceptance, and understanding — because we are all more than a chromosome. 💫

🧠💚 Cognitive Impairments Associated with Cerebral Palsy 💚🧠Cerebral Palsy doesn’t just affect movement — it can also impa...
13/10/2025

🧠💚 Cognitive Impairments Associated with Cerebral Palsy 💚🧠

Cerebral Palsy doesn’t just affect movement — it can also impact how a person learns, thinks, and communicates. Many individuals with CP experience:

By understanding these cognitive challenges, we can create better support systems and promote inclusion for every child and adult living with CP. Let’s stand together for awareness, compassion, and empowerment. 💪✨

🧠💚 OCD vs Anxiety: What’s the Difference? 💚While both OCD (Obsessive-Compulsive Disorder) and Anxiety Disorders involve ...
12/10/2025

🧠💚 OCD vs Anxiety: What’s the Difference? 💚

While both OCD (Obsessive-Compulsive Disorder) and Anxiety Disorders involve excessive worry and fear, they affect the mind and behavior in different ways. Understanding the difference helps in getting the right support.

🧠💚 The Cycle of OCD 💚OCD (Obsessive-Compulsive Disorder) often follows a repetitive cycle that traps individuals in anxi...
11/10/2025

🧠💚 The Cycle of OCD 💚

OCD (Obsessive-Compulsive Disorder) often follows a repetitive cycle that traps individuals in anxiety and repetitive behaviors. Understanding this cycle is the first step toward breaking it.

This ongoing loop makes OCD exhausting and hard to control without help. 💙
With therapy and support, the cycle can be broken, leading to a calmer and healthier mind. 🌿

🧠💚 Recognizing the Symptoms of OCD 💚Obsessive-Compulsive Disorder (OCD) is more than just being neat or careful — it’s a...
10/10/2025

🧠💚 Recognizing the Symptoms of OCD 💚

Obsessive-Compulsive Disorder (OCD) is more than just being neat or careful — it’s a mental health condition marked by repetitive thoughts and actions that cause distress.

Early recognition and proper treatment can help individuals lead calmer, healthier lives. 💙

🧬 Join us for another insightful session in ORDI’s Rare Info Series!This time, we’re exploring the topic:“SRT and Gauche...
09/10/2025

🧬 Join us for another insightful session in ORDI’s Rare Info Series!

This time, we’re exploring the topic:
“SRT and Gaucher’s Treatment – India Perspective”

🎙 Speaker: Dr. Radha Rama Devi
Senior Consultant Pediatrician & Geneticist, Rainbow Children’s Hospital, Hyderabad

🎤 Moderator: Dr. Dipanjana Datta
Genetic Counselor & Coordinator – ORDI (WB & NE)

🗓 Date: 15th October 2025
🕓 Time: 4 PM to 5 PM IST
📍 Join via Zoom:
Zoom ID: 852 6741 7803
Passcode: 8892555000

Let’s come together to understand the advancements and challenges in treating Gaucher’s Disease in India.

🔗 For more updates, visit www.ordindia.in

🧠💚 Understanding the Different Types of OCD 💚Obsessive-Compulsive Disorder (OCD) isn’t the same for everyone — it can ta...
09/10/2025

🧠💚 Understanding the Different Types of OCD 💚

Obsessive-Compulsive Disorder (OCD) isn’t the same for everyone — it can take many forms that affect daily thoughts and behaviors. Here are some common types:

Awareness helps us recognize that OCD is not just about habits — it’s about managing intense anxiety and finding support through understanding and therapy. 💙

💚 Understanding the Types of Cerebral Palsy 💚Cerebral Palsy affects muscle control and movement, but its impact varies f...
08/10/2025

💚 Understanding the Types of Cerebral Palsy 💚

Cerebral Palsy affects muscle control and movement, but its impact varies from person to person. Knowing the different types helps in better diagnosis, care, and support:

Awareness is the first step towards inclusion and better quality of life for those living with CP. Let’s stand together to make a difference. 💪✨

🧬 RARE INFO SERIES by ORDI 🧬Join us for an insightful session on “Genetics of Imprinting Disorders: The Under-Recognized...
07/10/2025

🧬 RARE INFO SERIES by ORDI 🧬

Join us for an insightful session on “Genetics of Imprinting Disorders: The Under-Recognized Among the Rare” — an exploration into the genetic mechanisms behind these rare yet impactful conditions.

🎙️ Speaker: Dr. Gayatri Rangarajan Iyer
Scientist – Tata Institute for Genetics and Society, Bengaluru
Joint Secretary – Board of Genetic Counselling India

👩‍⚕️ Moderator: Dr. G Aruna
Clinical Geneticist, Metabolic Physician, Professor & HOD Biochemistry,
Indira Gandhi Institute of Child Health, Bengaluru

🗓️ Date: 8th October 2025
🕓 Time: 4 PM – 5 PM IST
📍 Join via Zoom:
Zoom ID: 828 4280 0761 | Passcode: 8892555000

Let’s come together to raise awareness and understanding of rare genetic disorders. 💙

🔗 www.ordindia.in

📞 8892 555 000

🌍💚 World Cerebral Palsy Day | October 6 💚🌍Today, we celebrate the courage, creativity, and achievements of people living...
06/10/2025

🌍💚 World Cerebral Palsy Day | October 6 💚🌍
Today, we celebrate the courage, creativity, and achievements of people living with Cerebral Palsy (CP).

Launched in 2012, this global movement unites over 65 countries to raise awareness, advocate for rights, and inspire inclusion through innovation, accessibility, and education.

Let’s work together to build a world where every individual with CP has equal opportunities and the freedom to live life to the fullest. 💪✨

💔 A Young Fighter Needs Your Support!Janardhan, a brave youngster, is battling both cancer and pneumonia. His family has...
04/10/2025

💔 A Young Fighter Needs Your Support!
Janardhan, a brave youngster, is battling both cancer and pneumonia. His family has exhausted all their savings, and his recovery now depends on monthly medicines and regular hospital visits costing ₹30,000.

Your contribution, no matter how small, can bring hope and healing. 🙏
Let’s come together to help Janardhan fight and recover.

🔗 Donate now: https://savemylife.in/campaigns/a-teenagers-double-battle-help-janardhan-beat-cancer-and-pneumonia/

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

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