Shining a light on World Sjögren's Day! Let's stand together in support of those living with Sjögren's. In this reel, we'll share some everyday challenges faced by patients and how you can help. #WorldSjogrensDay #Sjögrens #invisibleillness Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforra
Organization for Rare Diseases India
Non-profit Organizations
Banglore, karnataka 1,781 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
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 | Director | CEO | Head Projects | Head Fundraising & Events | Entrepreneur | Consultant | Sales & Distribution | Product Marketing | Corporate…
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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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Aditi Shirodkar
Masters in Genetic Counseling, Kasturba Medical College, Manipal, Karnataka.
Updates
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Today is #WorldSjogrenSyndrome Day! Let's shine a light on this invisible illness and fight for better diagnosis, treatment, and a cure. #sjögrenstrong Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforra
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Celebrating the unique perspective of those with Fragile X Syndrome. Their world is filled with wonder! #FragileXawarenessDay #SeeTheWorldDifferently Prasanna Shirol Madhan Gopalan Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman Shalini Kedia #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforra
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Shine a light on Fragile X! Today is Fragile X Awareness Day. Let's raise awareness for this genetic disorder and support the Fragile X community. #FragileXAwarenessDay #fxs Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman Shalini Kedia #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforra
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𝐇𝐨𝐩𝐞 𝐟𝐨𝐫 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐏𝐚𝐭𝐢𝐞𝐧𝐭𝐬 𝐢𝐧 𝐁𝐞𝐧𝐠𝐚𝐥𝐮𝐫𝐮! The Organization for Rare Diseases India (ORDI) and St. John's Medical College Hospital (SJMCH) are proud to announce a collaboration to empower rare disease patients and their families in Bengaluru! 𝐓𝐡𝐫𝐨𝐮𝐠𝐡 𝐭𝐡𝐢𝐬 𝐩𝐚𝐫𝐭𝐧𝐞𝐫𝐬𝐡𝐢𝐩, 𝐰𝐞 𝐰𝐢𝐥𝐥: -Establish a Rare Disease Care Coordination Center (RDCCC): This dedicated center within SJMCH will be a one-stop care center for patients and families. -Offer Comprehensive Support: The RDCCC will provide guidance on: -Awareness: Raising awareness about rare diseases and their symptoms. -Prevention: Helping identify and potentially prevent rare diseases where possible. -Management: Effective management strategies to improve the quality of life for patients. -Education: Equipping patients and families with knowledge about their specific condition. -Treatment: Connecting patients with the most appropriate treatment options. This collaboration signifies a significant step forward for the rare disease community in Bengaluru. Together, ORDI and SJMCH aim to provide much-needed support and hope to patients and their families. 𝐖𝐞 𝐚𝐫𝐞 𝐞𝐱𝐜𝐢𝐭𝐞𝐝 𝐭𝐨 𝐬𝐡𝐚𝐫𝐞 𝐭𝐡𝐢𝐬 𝐣𝐨𝐮𝐫𝐧𝐞𝐲 𝐰𝐢𝐭𝐡 𝐲𝐨𝐮! 𝐂𝐨𝐧𝐠𝐫𝐚𝐭𝐮𝐥𝐚𝐭𝐢𝐨𝐧𝐬 𝐚𝐧𝐝 𝐓𝐡𝐚𝐧𝐤𝐬 𝐲𝐨𝐮... Dr. Maya Mascarenhas, Dr. Arpana Iyengar, Dr. Priya Pias, Fr. Jesudoss Rajamanickam (Director, SJMCH), Mr. Prasanna B Shirol (Executive Director, ORDI), Mr. Madhan Gopal, Mr. Prakash Lobo, Mr. Sachin Mulgund Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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Did you know there are 7 different types of JIA? This July, let's learn more about this childhood disease and support those affected. #JIAAwarenessMonth #DifferentTypesOneCause Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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𝐑𝐚𝐫𝐞 𝐄𝐲𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞𝐬: 𝐇𝐨𝐩𝐞 𝐈𝐠𝐧𝐢𝐭𝐞𝐬 𝐰𝐢𝐭𝐡 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 (𝐅𝐫𝐞𝐞 𝐖𝐞𝐛𝐢𝐧𝐚𝐫!) Have you heard of rare eye diseases? Many haven't, but they impact countless lives. CURED's FREE webinar tackles this critical issue on July 19th. -Unite with ophthalmologists, scientists & the public for a groundbreaking discussion. -Discover the patient journey through the eyes of an expert. -Dive into cutting-edge research presented by world-renowned scientists. -Ask questions LIVE during the interactive Q&A session. 𝐓𝐡𝐢𝐬 𝐰𝐞𝐛𝐢𝐧𝐚𝐫 𝐢𝐬 𝐝𝐞𝐬𝐢𝐠𝐧𝐞𝐝 𝐭𝐨: -Raise awareness about rare eye diseases. -Explore the latest research offering hope for a cure. -Highlight the importance of inclusive care for all. 𝐃𝐚𝐭𝐞: 𝐉𝐮𝐥𝐲 𝟏𝟗𝐭𝐡 𝐓𝐢𝐦𝐞: 𝟕-𝟖:𝟑𝟎 𝐏𝐌 𝐈𝐒𝐓 Register Now: [link to registration] (https://lnkd.in/gKVVKtbU) Don't miss this chance to join the conversation and shine a light on rare eye diseases! Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #RareEyeDiseases #Hope #CURED #Webinar #Research #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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Standing strong with the Sticklers Syndrome community! Although rare, this condition deserves more attention. Together, let's find a cure. #SticklersStrong #rarediseaseawareness Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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Shine a light on JIA! This July, let's raise awareness about this childhood arthritis. Symptoms like joint pain and stiffness can impact young lives. #JIA #ChildhoodArthritis Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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Early diagnosis is key! Be aware of the signs of JHF, a rare condition affecting children. Skin lesions, gum overgrowth, and joint stiffness could be indicators. Share to spread awareness! Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare