CSR Initiatives: Making a Difference in Communities

Corporate Social Responsibility

Fragile X Syndrome is the most commonly inherited, single gene cause of intellectual disability and autism worldwide. It can cause intellectual disabilities, attention deficit and hyperactivity, autism, autistic features, speech delay. Seizures affect about 25% of people with Fragile X Syndrome.

It is a genetically-defined inherited condition that can be diagnosed by a DNA blood test. The FMR1 Gene causing FXS was discovered in the year 1991. That explains the intense need for awareness on the condition worldwide. There are various organisations all over the world working towards creating awareness on Fragile X. We are the only organisation working for this cause in India.

FRAGILE X FACTS

It is estimated that in India we have approximately two to four hundred thousand children with FXS, most of whom are undiagnosed and untreated. There are also millions of carriers of the genetic premutation who are at risk for one or the other Fragile X-associated Disorders.
Fragile X can pass silently through generations until a someone in the family is affected. A DNA blood test is more than 99% accurate for diagnosing FXS.

FRAGILE X SOCIETY GOALS

Serve as a platform for parent support group to help families of children affected and network families with doctors for better management. It is the society’s goal to reach out to every professional who can help make the diagnosis and treat an affected child.
Awareness amongst the medical fraternity to help diagnose children at a young age and provide them with research and evidence based treatment options.
Awareness amongst genetic counsellors to enable them to empower families with reproductive options for carrier mothers. Whilst the team is working towards awareness amongst professionals, it is imperative for us to create public awareness for Fragile X.

FRAGILE X SOCIETY VISION

All children diagnosed with intellectual disability/autism should be tested for the medical condition called fragile X syndrome. Every child affected with Fragile X Syndrome should receive the latest research and evidence based treatments.
Genetic counselling be provided to affected families to help them take informed decisions while planning further children

FRAGILE X SOCIETY-INDIA

AFragile X Society - India was conceptualised in the year 2003.
It was registered as a trust in the year 2008.
In 2013, India's first Fragile X clinic in collaboration with Ummeed Child Development Center in Mumbai was launched.
The society works closely with the Indian Academy of Pediatrics to draw the guidelines for Fragile X in India and In March 2018 the IAP launched the guidelines. The guidelines were distributed to professionals all over India.
The society has supported and counselled over 3000 affected families.

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FRAGILE X FACTS

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