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

❤️ Aortic Dissection Awareness Day – September 19th ❤️Aortic Dissection is a serious, life-threatening condition caused ...
19/09/2025

❤️ Aortic Dissection Awareness Day – September 19th ❤️

Aortic Dissection is a serious, life-threatening condition caused by a tear in the inner layer of the aorta, the body’s main artery.
It is a medical emergency – quick recognition and timely treatment can save lives.

Let’s spread awareness, educate others, and work together to save lives. 💙

🌍✨ September 18th – Pitt-Hopkins Syndrome Awareness Day ✨🌍Today, we come together to raise awareness for Pitt-Hopkins Sy...
18/09/2025

🌍✨ September 18th – Pitt-Hopkins Syndrome Awareness Day ✨🌍

Today, we come together to raise awareness for Pitt-Hopkins Syndrome (PTHS) – a rare genetic neurological disorder that affects development, communication, and daily life. 💙

🧩 Children and individuals with PTHS may face challenges like developmental delays, speech difficulties, motor skill impairments, vision problems, and unique medical concerns. But with the right care, support, and awareness, we can create a more inclusive and understanding world. 💪💖

Let’s spread the word, support families, and bring hope for better research and interventions. 💙

🌟 Rare Info Series by ORDI 🌟Join us for an insightful session on Investigations, Surveillance and Monitoring in Cystic F...
17/09/2025

🌟 Rare Info Series by ORDI 🌟

Join us for an insightful session on Investigations, Surveillance and Monitoring in Cystic Fibrosis (CF) – “Tests that tell the story: Monitoring CF the right way”

🗣️ Speaker:
Dr. Supriya Suresh Shinde, Paediatric Pulmonologist & Sleep Specialist, Manipal Hospital, Bangalore

👥 Moderators:
🔹 Dr. Pallab Chatterjee, Consultant Pediatrician, Apollo Multispeciality Hospital, Manipal Hospital & Fortis Hospital
🔹 Dr. B Antony Terance, Chairperson, Department of Paediatrics, Consultant Paediatric Respiratory Medicine, GKNM Hospital, Coimbatore

📅 Date: 20th September 2025
🕕 Time: 6 PM – 7 PM IST
📍 Join via Zoom
🔗 Zoom ID: 844 2489 6411 | Passcode: 8892555000

👉 Don’t miss this session to understand how timely investigations and monitoring play a key role in improving CF care!

On World Patient Safety Day, let’s stand together to ensure timely diagnosis, proper treatment, and safe care for rare d...
17/09/2025

On World Patient Safety Day, let’s stand together to ensure timely diagnosis, proper treatment, and safe care for rare disease patients. 💙

💚 September 17th – Leigh Syndrome Awareness Day 💚Leigh Syndrome is a rare and progressive neurological disorder that mai...
17/09/2025

💚 September 17th – Leigh Syndrome Awareness Day 💚

Leigh Syndrome is a rare and progressive neurological disorder that mainly affects infants and young children. It is caused by defects in the mitochondria – the “powerhouses” of our cells – leading to a lack of energy in the brain and muscles.

🧩 Symptoms may include developmental delays, muscle weakness, movement disorders, breathing difficulties, and vision problems.
💡 While there is currently no cure, early diagnosis, supportive care, and ongoing research can improve quality of life and bring hope to families.

Today, let’s unite to spread awareness and support children and families living with Leigh Syndrome.

💜 September 16th – Microvillus Inclusion Disease (MVID) Awareness Day 💜MVID is a rare, life-threatening genetic disorder...
16/09/2025

💜 September 16th – Microvillus Inclusion Disease (MVID) Awareness Day 💜

MVID is a rare, life-threatening genetic disorder that prevents the intestine from absorbing nutrients and fluids. Babies born with this condition often suffer from severe chronic diarrhea, dehydration, and require IV nutrition for survival.

Today, let’s raise awareness, support families affected, and advocate for more research and treatment options. Together, we can bring hope and strength to those living with MVID.

💚 World Lymphoma Awareness Day – September 15th 💚Lymphoma is one of the most common blood cancers, yet many remain unawa...
15/09/2025

💚 World Lymphoma Awareness Day – September 15th 💚

Lymphoma is one of the most common blood cancers, yet many remain unaware of its early signs and symptoms.
Today, let’s come together to raise awareness, support patients and caregivers, and spread hope for a healthier tomorrow.

✨ Knowledge saves lives – share this message and be a voice for change.

💚 Today is PBC Awareness Day 💚Primary Biliary Cholangitis (PBC) is a chronic autoimmune disease that slowly damages the ...
14/09/2025

💚 Today is PBC Awareness Day 💚
Primary Biliary Cholangitis (PBC) is a chronic autoimmune disease that slowly damages the bile ducts in the liver, leading to scarring, cirrhosis, and liver failure if left untreated. Though rare, early diagnosis and treatment can help manage symptoms and improve quality of life.

Let’s come together to raise awareness, support patients, and encourage research for better treatments and care. 🌍✨

🧬 September is IEM Awareness Month 🧬Inborn Errors of Metabolism (IEM) are rare genetic disorders that affect how the bod...
12/09/2025

🧬 September is IEM Awareness Month 🧬
Inborn Errors of Metabolism (IEM) are rare genetic disorders that affect how the body processes food into energy. Without early detection and proper treatment, IEM can lead to serious health problems, especially in newborns and children.

Raising awareness helps promote early screening, timely intervention, and support for families living with IEM. Together, let’s shine a light on rare diseases and work towards better care. 💙

📌 September is Hirschsprung’s Awareness MonthHirschsprung’s disease is a rare condition affecting the large intestine’s ...
11/09/2025

📌 September is Hirschsprung’s Awareness Month
Hirschsprung’s disease is a rare condition affecting the large intestine’s nerve cells, making it hard for children to pass stool. Around 1 in 5,000 newborns are born with this condition. Early diagnosis and proper treatment can make a big difference.

Let’s spread awareness, support families, and work towards better care for those living with Hirschsprung’s. 💙

🧬 September is HSMN Awareness Month 🧬Hereditary Sensory Motor Neuropathy (HSMN), also known as Charcot-Marie-Tooth disea...
10/09/2025

🧬 September is HSMN Awareness Month 🧬
Hereditary Sensory Motor Neuropathy (HSMN), also known as Charcot-Marie-Tooth disease (CMT), is a group of inherited disorders that affect the peripheral nerves. It can cause progressive muscle weakness, loss of sensation, and difficulties with movement and balance.

Let’s come together to spread awareness, support those living with HSMN, and work towards a future with better care and solutions. 💙

🌟 Rare Info Series by ORDI 🌟Join us for an insightful session on Nutrition & Growth in Cystic Fibrosis (CF) – “Feeding r...
09/09/2025

🌟 Rare Info Series by ORDI 🌟

Join us for an insightful session on Nutrition & Growth in Cystic Fibrosis (CF) – “Feeding right to Fight CF: Nutrition and Pancreatic Care”

🗣️ Speaker:
Dr. Neha Mohan Rao, Paediatric Pulmonologist, Manipal Hospital, Bangalore

👥 Moderators:
🔹 Dr. Naveen Pillaresetti, Consultant Pediatric Pulmonologist & Sleep Specialist, Rainbow Children’s Hospital
🔹 Dr. Rashmi Ranjan Das, Professor, Department of Paediatrics, AIIMS Bhubaneswar

📅 Date: 13th September 2025
🕕 Time: 6 PM – 7 PM IST
📍 Join via Zoom
🔗 Zoom ID: 870 5965 4627 | Passcode: 8892555000

👉 Don’t miss this opportunity to learn from experts about the importance of nutrition and pancreatic care in managing CF!

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

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