Fragile X Society
Aims to raise medical awareness for early diagnosis, provide parent support, and enhance genetic counselors' knowledge for reproductive options.
- Bronze Certified 2023
- 80G
- 12A
About
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Headquarters
Mumbai, Maharashtra
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Since
2003
Fragile X Syndrome is the leading genetic cause of intellectual impairment amongst children. It is the only known cause of Autism due to a genetic ana Read moremoly. The Fragile X gene was discovered back in the year 1991, but there is still a lot of ignorance surrounding it. Researchers and organizations all over the world are working hard to find a solution to the problems caused by Fragile X. Objectives- 1. Awareness amongst the medical fraternity to help diagnose children at a young age and provide them with research and evidence based treatment options. 2. Serve as a platform for parent support group to help families of the affected children, and network families with doctors for better management. 3. Awareness amongst genetic counselors to enable them to empower families with reproductive options for carrier mothers. At present, the biggest challenge is the ignorance amongst professionals. Timely diagnosis will ensure early intervention, which will drastically improve the prognosis of the child. Also, being a genetic disorder it is very important for families to receive genetic counseling to help them make decisions for further children. It is estimated that in India we have nearly 4,00,000 children affected with Fragile X Syndrome, most of whom are undiagnosed.
Action
The Fragile X Society provides information and continued support to families and professionals working with those affected by Fragile X and associated conditions.
Demographies Served
Cause Area
Sub Sector
Impact
The organization works to improve the lives of those affected by Fragile X and associated conditions, supporting an inclusive community that understands the specific needs of Fragile X.
Vision & Mission
The Fragile X Society's mission is to improve the quality of life for all those affected by fragile X syndrome through support, information, and research promotion.
Leadership Team
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Shalini Nirmal Kedia
Chairman
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Nirmal B Kedia
Trustee
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Kinisha Sanhgvi
Assistant
Demographics & Structure
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No. of Employees
6-20
M&E
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Internal, External Assessors
No
Policies
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Ethics and Transparency Policies
No
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Formal CEO Oversight & Compensation Policy
No
Political & Religious Declarations
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On Affiliation if any
No
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On Deployment Bias if any
No
Registration Details
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PAN Card
AAATF2202M
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Registration ID
E/24053
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VO ID / Darpan ID
MH/2018/0204232
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12A
AAATF2202ME20077
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80G
AAATF2202MF20224
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FCRA
Not Available
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CSR Registration Number
Not Available
Other Details
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Type & Sub Type
Non-profit
Trust