feiffer Syndrome: Myths vs. Facts 🧬💡" ❌ Myth: Pfeiffer Syndrome only affects the skull. ✅ Fact: It can also impact facial features, hearing, breathing, and limb development. ❌ Myth: There is no treatment for Pfeiffer Syndrome. ✅ Fact: Early interventions like surgery and therapy can improve quality of life. ❌ Myth: It is always inherited from parents. ✅ Fact: While it can be inherited, many cases result from new genetic mutations. Raising awareness helps bust misconceptions and support those affected. 💙 #PfeifferSyndrome #RareDiseaseAwareness #MythsVsFacts #GeneticDisorder #Craniosynostosis #SupportRare #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 2,314 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
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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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Pfeiffer Syndrome is a rare genetic condition that affects skull and limb development. Common signs include: ✅ Premature fusion of skull bones (craniosynostosis) ✅ Wide-set, bulging eyes ✅ Underdeveloped midface ✅ Short, broad thumbs and toes ✅ Possible hearing loss or breathing issues Early diagnosis can help manage symptoms effectively. Spread awareness and support those affected! 💙 #PfeifferSyndrome #RareDiseaseAwareness #GeneticDisorder #Craniosynostosis #SupportRare #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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Pfeiffer Syndrome is a rare genetic disorder affecting skull and limb development. Early diagnosis and specialized care can improve quality of life. Let's spread awareness and support those affected. 💙 #PfeifferSyndrome #RareDiseaseAwareness #GeneticDisorder #CraniofacialSyndrome #SupportRare #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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May your Holi be filled with vibrant colors, joy, and laughter! 🌸🎨✨ Wishing you a bright and beautiful festival of colors. #HappyHoli2025 #FestivalOfColors"
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🌍 RARE INFO SERIES – Bardet-Biedl Syndrome 🌍 Join us for an insightful session on Bardet-Biedl Syndrome: Tales, Trials & Triumphs from Birmingham! 🧬✨ 🔹 Speaker: Dr. Mordi Muorah (Birmingham Children's Hospital NHS Foundation Trust) 🔹 Moderators: Dr.Dipanjana Datta (Genetic Counselor, ORDI) & @Dr. Rajiv Sinha (Pediatric Nephrologist) 📅 Date: 15th March 2025 ⏰ Time: 4 PM - 5 PM IST 📍 Join via Zoom: Zoom ID - 818 8123 9531 🔗 Scan the QR code or visit www.ordindia.in for more details! Don't miss this opportunity to learn about the latest insights and challenges in managing Bardet-Biedl Syndrome! 🙌 #RareDiseases #ORDI #BardetBiedlSyndrome #RareInfoSeries Prasanna Shirol Madhana Gopal Sangeeta Barde Praveen Kumar D S Lalith Seetharaman
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No disease is too rare to deserve research, awareness, and hope. Together, we can shine a light on rare diseases and support those who fight every day. #RareButNotAlone #RareDiseaseAwareness #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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Did you know Multiple Sclerosis (MS) has different types? 🧠💙 Each type affects individuals differently. 🔹 Relapsing-Remitting MS (RRMS) – Periods of relapse followed by remission. 🔹 Primary Progressive MS (PPMS) – Gradual worsening from the start. 🔹 Secondary Progressive MS (SPMS) – Initially relapsing-remitting, then progressing steadily. 🔹 Progressive-Relapsing MS (PRMS) – Steady progression with occasional relapses. Understanding MS types helps in better management and treatment. Stay informed, stay strong! 💪 #MSAwareness #TypesOfMS #MultipleSclerosis #StrongerThanMS #MultipleSclerosisAwareness #MSAwareness #StrongerThanMS #EndMS #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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Recognizing the signs of Multiple Sclerosis (MS) can lead to early diagnosis and better management. 🚨 Common symptoms include: ⚡ Fatigue 🌀 Dizziness & Balance Issues 🧠 Memory & Concentration Problems 🔥 Numbness or Tingling 👀 Blurred Vision or Vision Loss 💪 Muscle Weakness & Spasms If you or a loved one experience these symptoms, consult a doctor for early evaluation. Awareness is key! 💙🧠 #MSAwareness #KnowTheSigns #MultipleSclerosis #NeurologicalHealth #MultipleSclerosisAwareness #MSAwareness #StrongerThanMS #EndMS #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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𝐖𝐢𝐬𝐡𝐢𝐧𝐠 𝐞𝐯𝐞𝐫𝐲𝐨𝐧𝐞 𝐚 𝐇𝐚𝐩𝐩𝐲 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐖𝐨𝐦𝐞𝐧’𝐬 𝐃𝐚𝐲 𝟐𝟎𝟐𝟓! #HappyWomensDay #WomensDay2025 #InternationalWomensDay #EmpowerHer #WomenPower #SheInspires #StrongerTogether #CelebrateWomen #WomenOfStrength #BreakTheBias #WomenSupportingWomen #GirlPower #EqualityForAll #HerStory #FearlessFemales
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A healthy nervous system ensures smooth communication between your brain and body. But with Multiple Sclerosis (MS), this connection is disrupted. 💡 Know the signs, seek early intervention! 🧠💙 #MSAwareness #HealthyVsAffected #StrongerThanMS #MultipleSclerosisAwareness #MSAwareness #StrongerThanMS #EndMS #Advocacy #ORDI #RareDisease #Bengaluru #India #inspirational #nevergiveup #icareforrare #OrganizationforrarediseasesIndia #Awareness #Advocacy #Rarediseasepolicy #Treatment #Caregiver #Diagnosis #csrforrare
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