This month, let’s shine a light on the uniqueness and potential of individuals with Down Syndrome. Together, we can foster acceptance, support families, and advocate for equal opportunities. Celebrate with us! #DownSyndromeAwareness #inclusionforall 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 1,970 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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Let’s raise our voices to increase awareness and understanding of Joubert Syndrome. Together, we can support families, promote research, and create a more inclusive world for those affected. Every action counts! #JoubertSyndrome #rarediseaseawareness 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! Join us in celebrating the abilities and achievements of individuals with Down Syndrome. Together, we can raise awareness, promote acceptance, and advocate for inclusivity in our communities! #DownSyndromeAwareness #inclusionmatters 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 Joubert Syndrome Awareness Month Let’s come together to spread awareness, support affected families, and advocate for better care and research. Every small step brings us closer to brighter futures! #JoubertSyndrome #rarediseaseawareness 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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Spina Bifida & Hydrocephalus Awareness Day Together, we raise awareness, empower lives, and advocate for better care. Let's build a brighter future for everyone affected! #rarediseaseawareness 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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Submission Deadline Extended! Due to popular demand, the new deadline for submitting your Profile and Synopsis is now 28th October 2024. Don’t miss this opportunity—submit soon! #ANWESHAK #RareDiseaseAwareness #ExploreRareDiseases #MakeADifference #rarestaraward 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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Living with a rare disease doesn’t define you. Manage your condition, but let nothing manage your dreams. ✨ #RareDiseaseWarrior #StrengthBeyondDiagnosis #livelimitless 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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🎭 Kabuki Syndrome Awareness Day 🎭 Today, we shine a light on Kabuki Syndrome, a rare genetic condition characterized by distinctive facial features, developmental delays, and medical challenges. Let's come together to raise awareness, promote understanding, and support individuals and families living with this condition. Every story matters, every voice counts—let’s spread hope and compassion. 💙 #KabukiSyndromeAwareness #RareButStrong #SupportAndHope #KabukiSyndrome #AwarenessMatters 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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💚 Phelan-McDermid Syndrome Awareness Day 💚 Today, we come together to raise awareness and show support for individuals and families affected by Phelan-McDermid Syndrome (PMS), a rare genetic condition linked to developmental delays, intellectual disabilities, and unique challenges. Let’s spread understanding, compassion, and hope for a brighter future! 🌟 #PhelanMcDermidSyndrome #PMSAwareness #RareButStrong #SupportAndHope #AwarenessMatters 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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💙 Understanding the Causes of Canavan Disease 💙 Canavan Disease is a rare genetic disorder caused by mutations in the ASPA gene, which leads to a deficiency of the enzyme aspartoacylase. This enzyme plays a crucial role in breaking down NAA (N-acetylaspartate), a compound found in brain cells. Without it, NAA builds up, causing damage to nerve cells and impairing brain function. 🧬 How It’s Inherited: Canavan Disease is passed down in an autosomal recessive pattern, meaning a child must inherit two copies of the mutated gene (one from each parent) to develop the disease. Parents who carry one mutated gene each are carriers and often don’t show symptoms. 🔍 Raising Awareness Matters: Greater awareness about genetic disorders like Canavan Disease helps promote early diagnosis, genetic counseling, and research efforts to find effective treatments. Together, we can support families and advocate for better resources. 💙 #CanavanDisease #GeneticDisorder #CanavanAwareness #SupportAndHope #RareDiseaseAdvocacy 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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