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
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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