Fragile X Awareness
Fragile X is an inherited genetic disorder caused by a mutation in the X chromosome.
Our site aims to spread awareness of Fragile X Syndrome and the related pre-mutation carrier conditions. We offer information on where to find out more and what support options are available worldwide.
What is Fragile X?
Fragile X is a group of inherited conditions caused by alterations of the FMR1 gene on the X chromosome. It affects individuals in a variety of ways.
Fragile X Syndrome causes intellectual disability, behavioural and learning difficulties, and physical problems. It is the leading inherited cause of intellectual disability worldwide.
Carriers who do not have Fragile X Syndrome (pre-mutation carriers) may have a range of distinct, different, conditions. These are known as FXTAS, FXPOI, FXAND and FXVAC.
Why Fragile X Awareness Is So Important
- So that carriers and those affected receive the most appropriate treatment, therapy and support.
- So that children are not mis-diagnosed with Autism or other conditions rather than Fragile X.
- So that carriers aren’t mis-diagnosed with Parkinson’s or Alzheimer’s Disease rather than as a Fragile X carrier suffering from FXTAS.
- So that carrier women with FXPOI who struggle to conceive, or cannot conceive at all, are given the correct genetic counselling and treatment.
- So that those carriers suffering from neuropsychiatric, pain or autoimmune disorders receive appropriate treatment and counselling.
- So that more funding is given towards research into drug and therapy interventions.
How to Spread Fragile X Awareness
- Inform as many people as you can about Fragile X.
- Download information from your country’s Fragile X Websites: show it to friends and family, print out copies take it to your child’s schools, your doctors, specialists and therapists.
- Talk about it with people you meet who show interest.
- Visit Fragile X websites and share their information and images pn social media– see our Organization page.
- Visit Fragile X Facebook Pages and share posts- see our Facebook links page.
- Use the Share buttons at the bottom of this page and post to your social media accounts.
- Join in your country’s Fragile X Awareness month activities.
- Download posters and cards, and order T-shirts and other merchandise to give to friends, or to display at your home, on your car and at medical offices.
How Common Is Fragile X
- Fragile X Syndrome (FXS) is the leading inherited cause of intellectual disability. worldwide.
- Approximately 1 in 250 women and 1 in 800 men are carriers of Fragile X and they may suffer from FXTAS. FXPOI, FXAND and other associated disorders.
- Fragile X Syndrome is the most common known cause of Autism and autistic type behaviours.
- It is estimated that about 1 in 3,600-4,000 males and between 1 in 4,000-6,000 females are affected by the disorder (rather than just being carriers).
- It occurs in all racial and ethnic groups around the world.
Stories from Families
Personal Stories
from
Fragile X Association Australia
Hope and Inspiration
from
NFXF
Real Life Stories
from
Fragile X Society UK