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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
  • 12A
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About

  • Headquarters

    Mumbai, Maharashtra

  • Since

    2007

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.

Demographies Served

Cause Area

Sector

Sub Sector

Leadership Team

  • Shalini Nirmal Kedia

    Chairman

  • Nirmal B Kedia

    Trustee

  • Kinisha Sanhgvi

    Assistant

Demographics & Structure

  • No. of Employees

    6-20

M&E

  • Internal, External Assessors

    No

Policies

  • Ethics and Transparency Policies

    No

  • Formal CEO Oversight & Compensation Policy

    No

Political & Religious Declarations

  • On Affiliation if any

    No

  • On Deployment Bias if any

    No

Registration Details

  • PAN Card

    AAATF2202M

  • Registration ID

    E/24053

  • VO ID / Darpan ID

    MH/2018/0204232

  • 12A

    AAATF2202ME20077

  • FCRA

    Not Available

  • CSR Registration Number

    Not Available

Location

Other Details

  • Type & Sub Type

    Non-profit
    Trust

Website

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