Organization For Rare Diseases India

08/03/2026

🌸 𝗛𝗮𝗽𝗽𝘆 𝗪𝗼𝗺𝗲𝗻’𝘀 𝗗𝗮𝘆 𝟮𝟬𝟮𝟲! 🌸

07/03/2026

Understanding the real-life challenges faced by individuals and families affected by Huntington's Disease is essential for better care, awareness, and support.

Join us for an insightful session in the ORDI Rare Info Series on “Challenges in Huntington's Disease.” This expert discussion will help you understand the medical, emotional, and social aspects surrounding this condition.

👨‍⚕ Speaker: Dr. Mitesh Shetty
🎙 Moderator: Dr. Ksh*tija Patil

📅 Date: 11th March 2026
⏰ Time: 4:00 PM – 5:00 PM IST
💻 Platform: Zoom

Scan the QR code or use the Zoom details to join the session.

Let’s come together to learn, share knowledge, and strengthen support for the rare community.

05/03/2026

Running is not just about speed or stamina — it’s about purpose.
In this inspiring message, a marathon runner shares why participating in Racefor7 means more than just completing a race. It’s about standing in solidarity with millions living with rare diseases.

Racefor7 is a flagship awareness initiative by Organization for Rare Diseases India (ORDI), dedicated to amplifying the voices of individuals and families affected by rare

04/03/2026

"It was truly our privilege to engage over a panel discussion with the Novo Nordisk GBS Team on the many dimensions of Rare Diseases.

The session brought together lived experiences shared by Mr. Prasanna Shirol, Ms. Rekha, and Ms. Sirisha, alongside ORDI’s mission, impact, and long-term vision presented by Mr. Madhana Gopal. These conversations go beyond awareness — they build empathy, accountability, and a deeper understanding of how the global ecosystem views the challenges faced by Rare Disease families in India.

Held to commemorate Rare Disease Day, the interaction reaffirmed that patient voices must remain central to policy, research, and access discussions.

We extend our heartfelt thanks to the team Novo Nordisk Global for their enthusiastic participation. Around 300 employees participated in Racefor7 2026, making it truly memorable.

03/03/2026

🌸✨ 𝗛𝗮𝗽𝗽𝘆 𝗛𝗼𝗹𝗶! ✨🌸

28/02/2026

World Rare Disease Day is observed globally to raise awareness about rare diseases and the challenges faced by millions of individuals and families.

A rare disease may affect a small percentage of the population, but collectively, rare diseases impact millions worldwide. This day reminds us of the importance of early diagnosis, access to treatment, research advancements, and inclusive healthcare policies.

Let us stand together to create awareness, encourage support, and bring hope to those living with rare conditions.

Because every life matters. Every story matters. Every voice matters.

27/02/2026

Running is not just about speed or stamina — it’s about purpose.

In this inspiring message, a marathon runner shares why participating in Racefor7 means more than just completing a race. It’s about standing in solidarity with millions living with rare diseases.

Racefor7 is a flagship awareness initiative by Organization for Rare Diseases India (ORDI), dedicated to amplifying the voices of individuals and families affected by rare diseases in India.

26/02/2026

https://youtu.be/5hUoXjzME8Q

A significant milestone for the rare disease community in Karnataka.The Government of Karnataka is set to announce the State Rare Diseases Policy soon — a mu...

26/02/2026

A significant milestone for the rare disease community in Karnataka.

The Government of Karnataka is set to announce the State Rare Diseases Policy soon — a much-needed initiative that will strengthen care, improve access to treatment, and bring hope to thousands of families.

We extend our heartfelt gratitude to Dinesh Gundu Rao, Hon’ble Health Minister of Karnataka, for his commitment and support towards strengthening care, awareness, and policy initiatives for individuals and families affected by rare diseases.

This step marks progress toward better healthcare infrastructure, structured support systems, and inclusive policy frameworks in the state.

Together, we move closer to lasting care, stronger advocacy, and a more supportive future for the rare disease community.

25/02/2026

February is Ectodermal Dysplasias Awareness Month 💙

Ectodermal Dysplasias are a group of rare genetic disorders that affect structures derived from the ectoderm — including hair, teeth, nails, and sweat glands. These conditions impact approximately 1 in 7,000–10,000 newborns worldwide.

Awareness leads to early diagnosis.
Early diagnosis leads to better care.
Better care leads to stronger families.

Let’s stand together to spread knowledge, support affected families, and advocate for improved access to treatment and policy support for rare diseases.

24/02/2026

💜 February 24 – Anorexia Awareness Day

Anorexia nervosa is not a choice. It is a serious mental health condition that affects both the body and the mind. Behind every struggle is a person who deserves understanding, compassion, and support.

On this day, we stand together to raise awareness, break stigma, and remind everyone that recovery is possible — and no one has to walk this journey alone.

At ORDI, we believe in awareness, advocacy, and hope. Let’s create a world where seeking help is seen as strength. 💜

If you or someone you know is struggling, reach out. Support can make all the difference.

24/02/2026

🏃‍♂️🏃‍♀️ Thank You for Being a Part of Race For 7! 💛

Your energy, spirit, and support made this event truly meaningful. Together, we ran to raise awareness for 7000 rare diseases and stand in solidarity with countless families.

🎖️ Download Your Timing Certificate
Check your official timing and get your certificate through the link or QR code provided.

📸 Find Your Event Photos
Search using your Bib Number or try the Selfie option to relive your race-day moments!

✨ Scan the QR codes to access your certificates & photos instantly.
Celebrate your run. Share your pride. Don’t forget to tag us in your posts!