💜 Rett Syndrome progresses through distinct stages, each affecting individuals in different ways. From early onset developmental delays to more severe motor and communication challenges, the journey through Rett can be complex. However, with awareness and support, we can help improve the quality of life for those affected. Let’s raise our voices for research and care! #RettSyndromeAwareness #SupportRettFamilies #HopeForRett 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 1,934 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@ 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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Aditi Shirodkar
Medical Genetics Genetic Counseling
Updates
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💙💛 Down Syndrome is a genetic condition caused by the presence of an extra copy of chromosome 21. It affects development, but it doesn’t define the incredible abilities and potential of those who have it. By raising awareness, we can foster understanding, acceptance, and support for individuals with Down Syndrome. Let’s continue to celebrate diversity and promote inclusion! #DownSyndromeAwareness #Chromosome21 #celebratedifferences 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 𝐀𝐫𝐭𝐡𝐫𝐢𝐭𝐢𝐬 𝐃𝐚𝐲 𝟐𝟎𝟐𝟒!! #worldarthritisday #WAD #WAD2024 #ArthritisAwareness #OsteoarthritisPrevention #ArthritisSupport
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May this auspicious occasion bring the triumph of good over evil, light over darkness, and knowledge over ignorance. 𝐇𝐚𝐩𝐩𝐲 𝐃𝐮𝐬𝐬𝐞𝐡𝐫𝐚 𝟐𝟎𝟐𝟒!!! #dussehra #happydussehra2024 #navratri #festival #durgapuja #india #indianfestival #celebration #love #dussehraspecial #festive #instagram #vijayadashami #festivals #ravan #dussehrawishes #ram #culture #dussehrafestival #ravana #ethnicwear #instagood #festivevibes #festiveseason
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🧠💜 Did you know? Rett Syndrome primarily affects girls and can lead to severe cognitive and physical impairments. Despite the challenges, individuals with Rett Syndrome are full of strength and resilience. This October, let's come together to raise awareness, support research, and offer our love to those impacted by this rare neurological disorder. Every voice matters, and every step forward counts! #RettSyndromeAwareness #HopeForRett #raiseawareness 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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October is Down Syndrome Awareness Month! 💙💛 Let’s celebrate the incredible strength, love, and achievements of individuals with Down Syndrome. Together, we can raise awareness, promote inclusivity, and break down barriers. Join us in spreading kindness, understanding, and support for everyone with Down Syndrome and their families. Every life is unique and full of potential! #DownSyndromeAwareness #InclusionMatters #CelebrateDifferences 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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OCD is far more than wanting things to be neat or organized . it’s about battling anxiety, fear, and the relentless urge to perform rituals to feel "right." #OCDFacts #ORDI #ObsessiveCompulsiveDisorder #MentalHealthAwareness #BreakTheStigma #OCDSupport #supportandawareness 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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🌟 Rare Disease Quote of the Day 🌟 “In a world where you can be anything, be kind. For every individual with a rare disease has a story that deserves to be heard and a life that matters.” #RareDiseaseDay #ORDI #QuoteOfTheDay #AwarenessMatters #compassioninaction 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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🌟 Rett Syndrome Awareness Month 🌟 October is Rett Syndrome Awareness Month, a time to shed light on this rare neurological disorder that primarily affects girls. Rett Syndrome impacts the development of motor and communication skills, leading to significant challenges for those affected and their families #RettSyndromeAwareness #ORDI #SupportAndResearch #TogetherForChange 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 Cerebral Palsy Day 🌍 On October 6th, we observe World Cerebral Palsy Day, a global initiative dedicated to raising awareness about cerebral palsy (CP) and advocating for the rights and inclusion of individuals living with this condition. 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