Organization For Rare Diseases India

🧬 Every rare disease journey begins with awareness and the right diagnosis. Join ORDI’s Rare Info Series for an insightful session on “Lysosomal Storage Disorders: Unmasking the Silent Burden through Biochemical Diagnosis” featuring expert insights from leading professionals in genetics and bioinformatics.

🎙 Speaker: Dr. Anikha Bellad
🎤 Moderator: Ms. Upasana Mukherjee

📅 Date: 27th May 2026
⏰ Time: 4 PM – 5 PM IST
📍 Join via Zoom

Let’s come together to spread awareness about rare diseases, early diagnosis, and the importance of genetic counselling. 💙

💜 May is Lupus Awareness Month — a time to stand with lupus warriors, spread understanding, and remind every individual living with lupus that they are not alone.

Lupus may be invisible to the eye, but its challenges are real. Behind every smile can be a silent battle filled with pain, fatigue, and uncertainty. Through awareness, empathy, and support, we can help create a more compassionate and informed world for those affected.

✨ Stronger Together. Unstoppable Together.
💜 Not all disabilities are visible. Not all pain is obvious.

🎗️ On International Behçet’s Awareness Day, we join hands to spread awareness about Behçet’s Disease — a rare, chronic inflammatory disorder that can affect multiple systems in the body.

Recognizing symptoms early and ensuring timely diagnosis and treatment can help improve quality of life and prevent serious complications. Let’s stand together to support patients, encourage understanding, and inspire hope for those living with rare diseases. 💙❤️

✨ Awareness. Early Diagnosis. Better Care.
💙 You are not alone.

🔬 On International Clinical Trials Day, we recognize the power of research in transforming healthcare and improving lives. Clinical trials play a vital role in discovering new treatments, advancing medical science, and building hope for patients worldwide.

Every breakthrough begins with research, and every participant contributes to a healthier tomorrow. Together, let’s support innovation, encourage awareness, and celebrate the progress that clinical trials bring to global healthcare. 💙

✨ Research Today. Healthier Tomorrow.
🧪 Every trial brings us closer to better care and brighter futures.

💜 On World IBD Day, we stand united to raise awareness about Inflammatory Bowel Disease (IBD), including Crohn’s disease and ulcerative colitis.

Living with IBD can be challenging, but awareness, early diagnosis, support, and compassion can make a meaningful difference in the lives of patients and families. Together, let’s educate communities, advocate for better care, and inspire hope for a healthier future.

🎗️ Raise Awareness
🤝 Support Patients
📢 Advocate for Change

💚 On World Homocystinurias Awareness Day, we stand together to spread awareness, inspire hope, and support individuals and families affected by these rare inherited metabolic disorders.

Early diagnosis and timely treatment can make a life-changing difference. Let’s continue advocating for better understanding, stronger support systems, and increased research for rare diseases.

🌍 Rare does not mean invisible.
🎗️ Awareness brings hope.

Join ORDI’s Rare Info Series for an insightful session on AL Amyloidosis – The Rare Disease Hiding in Plain Sight. Learn about the challenges of diagnosis, treatment options including stem cell transplant, and advancements in patient care from leading experts in hematology and genetic counseling.

🩺 Speaker: Dr. Nikhil M Kumar
🎙️ Moderator: Mr. Nadir Aman
📅 Date: 20th May 2026
⏰ Time: 4 PM – 5 PM IST
💻 Join via Zoom

Together, let’s spread awareness about rare diseases and support early diagnosis and better outcomes for patients and families.

𝐇𝐚𝐩𝐩𝐲 𝐍𝐮𝐫𝐬𝐞𝐬 𝐃𝐚𝐲 𝟐𝟎𝟐𝟔 💙

⏳ Nominations Extended – Rare Star Award 2026 💙

There’s still time to recognise inspiring journeys, impactful contributions, and extraordinary resilience within the rare disease community. 🌍✨

🏆 Nominations for the Rare Star Award 2026 are now open till:
📅 20 May 2026

Only 8 days remaining to submit your nominations.

👉 Nominate yourself or someone you know who is making a meaningful difference as a patient, caregiver, doctor, researcher, advocate, or changemaker.

🌐 linktr.ee/rare_star_award

Every rare journey deserves recognition. 💫

PatientAdvocacy HealthcareHeroes

Save the Date 💙

Join us for the Rare Star Award 2026 — an evening dedicated to honouring inspiring individuals and organizations making a meaningful impact in the rare disease community. 🌍✨

🏆 Celebrating courage, advocacy, innovation, care, and resilience.

📅 20 June 2026, Saturday
🕔 5:00 PM

We look forward to celebrating this special occasion with you. 💫

PatientAdvocacy HealthcareHeroes CommunityImpact