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
Organization for Rare Diseases India
Non-profit Organizations
Banglore, karnataka 1,770 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
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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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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
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𝐔𝐧𝐜𝐨𝐯𝐞𝐫 𝐭𝐡𝐞 𝐰𝐨𝐫𝐥𝐝 𝐨𝐟 𝐠𝐞𝐧𝐞𝐭𝐢𝐜 𝐝𝐢𝐬𝐨𝐫𝐝𝐞𝐫𝐬 𝐰𝐢𝐭𝐡 𝐮𝐬! -Learn about Inborn Errors of Metabolism, Maple Syrup Urine Disease, and Phenylketonuria. -Know about AHUS PAG & get inspired by Kamal Shah's revolutionary work. -Join us in raising awareness for Facioscapulohumeral Muscular Dystrophy, Sturge-Weber Syndrome, and Batten Disease. Your support can make a big difference! Donate now and be a part of the change https://lnkd.in/g74jrDfE 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
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Infantile Systemic Hyalinosis and Juvenile Hyaline Fibromatosis are rare, life-threatening conditions. Let's find a cure 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
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May God shower you with blessings today and always! May the year ahead bring everything you've been working toward! May All Your Wishes Come True! To our Beloved Leader & Mentor Wishing You a Very Happy birthday Sangeeta Barde Maam
The ORDI Team wishes a very 𝐇𝐀𝐏𝐏𝐘 𝐁𝐈𝐑𝐓𝐇𝐃𝐀𝐘 𝐭𝐨 𝐌𝐫𝐬. 𝐒𝐚𝐧𝐠𝐞𝐞𝐭𝐚 𝐁𝐚𝐫𝐝𝐞! Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis
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The ORDI Team wishes a very 𝐇𝐀𝐏𝐏𝐘 𝐁𝐈𝐑𝐓𝐇𝐃𝐀𝐘 𝐭𝐨 𝐌𝐫𝐬. 𝐒𝐚𝐧𝐠𝐞𝐞𝐭𝐚 𝐁𝐚𝐫𝐝𝐞! Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis
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Born with unique features? Goldenhar syndrome affects face, ears & spine. Uneven features, missing ear, curved spine? It could be Goldenhar Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #RareDisease #Support #MedicalAwareness #ORDI #TogetherWeCan #Organizationforrarediseasesindia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #GoldenharSyndrome #HemifacialMicrosomia
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July is Goldenhar Syndrome Awareness Month! Let's raise awareness for this craniofacial condition that affects the development of the face, ears, and spine Prasanna Shirol Madhana Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #RareDisease #Support #MedicalAwareness #ORDI #TogetherWeCan #Organizationforrarediseasesindia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #GoldenharSyndrome #HemifacialMicrosomia
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Constant joint pain, especially in the morning? #EnthesitisRelatedArthritis could be why. Share to raise awareness! Prasanna Shirol Madhan Gopal Praveen Kumar D S Sachin Mulgund Sangeeta Barde Lalith Seetharaman #RareDisease #Support #MedicalAwareness #ORDI #TogetherWeCan #Organizationforrarediseasesindia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis
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