🚬 COPD Risks 🫁 Smoking, air pollution, and long-term exposure to harmful chemicals are major risks for developing Chronic Obstructive Pulmonary Disease (COPD). Protect your lungs—take steps today to reduce your risk and breathe easier tomorrow! 💨 #COPDRisks #LungHealth #BreatheWell Prasanna Shirol Madhana Gopal Praveen Kumar D S Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
Organization for Rare Diseases India
Non-profit Organizations
Banglore, karnataka 2,017 followers
Collective voice of all persons living with rare disorders in India. National umbrella organization.
About us
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.
- Website
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https://ordindia.in/
External link for Organization for Rare Diseases India
- Industry
- Non-profit Organizations
- Company size
- 201-500 employees
- Headquarters
- Banglore, karnataka
- Type
- Educational
- Founded
- 2013
Locations
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Primary
Get directions
Banglore, karnataka 560029 , IN
Employees at Organization for Rare Diseases India
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Prasanna Shirol
TEDxPune Speaker, Proud parent of Rare Disease Child, Rare Disease Advocate, Social Entrepreneur, Members ICMR - CECHR (Lay person), WHO-GCN4RD…
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Madhana Gopal
COO@ Organization for Rare Diseases India | #Rare Diseases Cause Volunteer forever |
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Madhumita Bhattacharya
Rare Disease Warrior | Counselling Psychologist | Mental Health Educator | Mental Health Professional | Promoting Mental Well-being and Awareness
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Purvi Shah
BGCI Level I certified Genetic Counselor
Updates
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🌍 World COPD Day 🌬️ Today, we raise awareness about Chronic Obstructive Pulmonary Disease (COPD)—a condition that affects millions worldwide. Let’s join hands to spread knowledge, encourage early detection, and support those living with COPD. Breathe easy, live better! 💙 #WorldCOPDDay #COPDAwareness #healthylungs Prasanna Shirol Madhana Gopal Praveen Kumar D S Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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Chronic Obstructive Pulmonary Disease (COPD) is a progressive lung condition that makes it hard to breathe, often caused by smoking or long-term exposure to harmful pollutants. Early detection and proper care can help manage symptoms and improve quality of life. 🌿 #COPD #LungHealth #breatheeasy Prasanna Shirol Madhana Gopal Praveen Kumar D S Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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💚✨ World Smith-Magenis Syndrome Awareness Day: Shining a Light on SMS ✨💚 Today, we raise awareness for Smith-Magenis Syndrome (SMS), a rare genetic disorder that affects development, behavior, and sleep. Let’s show our support for those living with SMS and their families as we work towards greater understanding, research, and hope for improved therapies. 💙 Together, we can create a world of inclusion, compassion, and awareness for SMS. 💙 #SmithMagenisSyndrome #SMSAwareness #RareDisease #hopeandawareness Prasanna Shirol Madhana Gopal Praveen Kumar D S Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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💜✨ World Sanfilippo Syndrome Day: Spreading Awareness, Inspiring Hope ✨💜 Today, we stand together to raise awareness for Sanfilippo Syndrome, a rare genetic disorder affecting children and their families around the world. Let’s honor the strength of these children and their families, support ongoing research, and advocate for better treatments and a cure. 💪 Together, we can make a difference. Let’s shine a light on Sanfilippo and work towards a brighter future. 💪 #WorldSanfilippoDay #SanfilippoSyndrome #RareDiseaseAwareness #hopeforacure Prasanna Shirol Madhana Gopal Praveen Kumar D S Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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🔬✨ How Genetic Counselors Make a Difference ✨🔬 Genetic counselors play a crucial role in healthcare, translating complex genetic information into clear, actionable insights for individuals and families. They empower patients with knowledge about inherited conditions, support them in making informed health decisions, and provide compassionate guidance through often challenging journeys. 💙 Thank you, genetic counselors, for your dedication to helping families find answers and build healthier futures. 💙 #GeneticCounseling #HealthcareHeroes #InformedDecisions #GeneticHealth #compassionincare Prasanna Shirol Madhana Gopal Praveen Kumar D S Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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🔬✨ Celebrating Genetic Counselor Awareness Day 2024! ✨🔬 Today, we recognize the specialized role of genetic counselors who focus on rare diseases, offering vital support to patients and families facing complex genetic conditions. These counselors provide not only expert insights into rare genetic conditions but also compassionate guidance, helping individuals understand their diagnosis, options, and ways forward. 🌱 Thank you to all rare disease genetic counselors for being a beacon of hope and clarity! 🌱 #RareDiseaseGenetics #GeneticCounselor #GeneticAwareness #hopeforrarediseases Prasanna Shirol Madhana Gopal Praveen Kumar D S Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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📢 𝐉𝐨𝐢𝐧 𝐔𝐬 𝐟𝐨𝐫 𝐭𝐡𝐞 𝐑𝐀𝐑𝐄 𝐆𝐄𝐍𝐄𝐓𝐈𝐂 𝐃𝐈𝐒𝐄𝐀𝐒𝐄𝐒 𝐑𝐄𝐒𝐄𝐀𝐑𝐂𝐇 𝐒𝐔𝐌𝐌𝐈𝐓 (𝐑𝐄𝐃𝐑𝐄𝐒𝐒 - 𝟐𝟎𝟐𝟒)! 📢 📅 𝐃𝐚𝐭𝐞𝐬: 𝟐𝟖𝐭𝐡 & 𝟐𝟗𝐭𝐡 𝐍𝐨𝐯𝐞𝐦𝐛𝐞𝐫 𝟐𝟎𝟐𝟒 📍 𝐋𝐨𝐜𝐚𝐭𝐢𝐨𝐧: Tata Institute for Genetics and Society, inStem Building, GKVK post, Bellary Road, Bengaluru 🔬 𝐀𝐛𝐨𝐮𝐭 𝐑𝐄𝐃𝐑𝐄𝐒𝐒 𝟐𝟎𝟐𝟒: This two-day summit brings together leading experts, researchers, and advocates to discuss groundbreaking advances and future directions in rare genetic disease diagnostics, treatment, and research. Attendees will have opportunities to engage with thought leaders from prestigious institutions, participate in sessions on cutting-edge topics like gene editing, orphan drug development, and newborn screening, and connect with peers in this critical field. 💬 𝐏𝐫𝐨𝐠𝐫𝐚𝐦 𝐇𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬: Session I: Advances in Diagnostics & Management Session II: Gene Editing & Therapy Panel Discussions: Orphan Drug Development & Treatment Protocols, Diagnostics & Therapeutics Sessions on Newborn Screening, Clinical Research, and Industry Perspectives ✨ Don’t miss this incredible opportunity to learn, connect, and contribute to the future of rare genetic disease research in India! 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰 𝐭𝐨 𝐬𝐞𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫 𝐬𝐩𝐨𝐭: https://lnkd.in/geiguZ6a #REDRESS2024 #RareDiseases #GeneticResearch #BengaluruSummit #ORDI Prasanna Shirol Madhana Gopal Praveen Kumar D S Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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Organization for Rare Diseases India reposted this
🌍 World Kindness Day: Celebrating Partnerships that Empower and Inspire! At Allianz Technology, we believe in the power of partnerships to drive positive change. Today, on World Kindness Day, we’re thrilled to spotlight our impactful collaborations with several CSR partners. 🎓 Raspberry Pi Foundation: The Raspberry Pi Foudation’s mission is to make computing and digital skills accessible to young people. Through initiatives like Code Clubs and digital resources, kids and teenagers worldwide are learning to harness technology to solve real-world challenges. This partnership aligns with Allianz Technology’s goal to empower the next generation with the skills they need to succeed in a digital world. 👩💻 Technovation Girls: Technovation Girls is all about fostering tech innovation and leadership among young girls. Their program supports young girls aged 8-18 globally as they learn to code, develop mobile apps, and create tech-driven solutions to problems in their communities. This partnership encourages the growth of future female tech leaders, creating a more inclusive tech industry. 🏥 Organization for Rare Diseases India (ORDI): Enabled by Tech To The Rescue, Allianz Technology also collaborates with ORDI, with our tech experts putting their skills at work to the benefit of rare disease patients and their families. This partnership emphasizes empathy and accessibility ensuring rare disease patients feel supported. ⛺ Tent Partnership for Refugees: TENT supports refugees in integrating into the workforce, offering economic opportunities and career growth pathways in their host communities. TENT works globally to connect refugees with corporate resources, creating a sustainable impact. Together with these compassionate partners, Allianz Technology is proud to support initiatives that bring learning, fostering, and kindness to communities worldwide. Let’s continue to empower young minds and foster a more inclusive future through technology! #WorldKindnessDay #AllianzTechnology #EmpoweringYouth #TechForGood Gülay Stelzmüllner Dr. Axel Schell Jordi Balcells Natascha Waag Christina Lang Julie H. Ruile