• News
Mathijs B. van der Lei and R. Frank Kooy

80 years of progress in FXS research
  • News
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  • Research
Fragile X Syndrome across the lifespan

Fragile X Syndrome across the lifespan with a focus on Genetics, Neurodevelopmental, Behavioral and Psychiatric Associations: A new systematic review
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non-pharmacological interventions

A systematic review of non-pharmacological interventions targeting motor difficulties in neurodivergent children
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Respiratory Sinus Arrhythmia - a drawing of a lung

First-of-its-kind study on Reduced Respiratory Sinus Arrhythmia in infants with the FMR1 premutation
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Premutation Females with preFXTAS

Premutation Females with preFXTAS: A paper calling for sex-specific diagnostic criteria
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Dr Alice Montanaro

“When Life Becomes More Demanding”: A lifelong, multi-integrated approach in delivering Neuropsychological-Cognitive Behavioural Therapy to young adults living with FXS
  • News
International Workshop on Fragile X Syndrome: in memory of Professor Alessandra Murgia

International Workshop on Fragile X Syndrome: in memory of Professor Alessandra Murgia
  • Family Stories
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  • News
Rishabh Jain (pictured above with Aamir Khan) is the world’s first actor living with FXS

Bringing FXS to the Big Screen: Groundbreaking representations of Fragile X Syndrome in cinema
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A Father and two boys living with Fragile-X-Syndrome

“Despite having intellectual disability and autism characteristics, children with FXS are skilled at mentalising”, a new study finds. 
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6 months in Retrospect
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Shape Research, Change Lives: your voice matters!
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Colourful Brain Network Mapping

Brain network alterations in Fragile X Syndrome
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Typical facial characteristics of a boy with Fragile-X-Syndrome

Facial characteristics description and classification – New developments
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A computer edited picture of the X chromosome

New study documents the association between common genetic variation and behavioural trajectories in males living with FXS
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Man with a boy on his shoulders confidently walking in the sunset

#Resolution4Rare – A landmark resolution
  • Family Stories
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  • News
A mother and her three children running for a good cause

Running the X for Fragile X – Interview with Bríd
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A Boy is thinking

A new systematic review
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first FraXI congress

Abstracts of the 1st Fragile X International Congress
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Red and Blue DNA picture

FMR1 Premutation and Anxiety – New Study
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Boy at beach

Speech Development – New Study
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Member's meeting in Barcelona

FraXI at the 8th RE(ACT) Congress and 6th International Rare Diseases Research Consortium (IRDiRC)
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I support Rare Disease Day

Celebrating Rare Disease Day – February 28th 2025
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Symbols of what people living with disabilities have to cope with in life

Results of the Rare Barometer Survey 2025: Recognising Disabilities and Barriers
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FraXI Newsletters
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International Fragile X Awareness Day 2024

International Fragile X Awareness Day 2024
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Two boys with FXS

Joys of Fragile X – A Paper has been Published
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Rare Diseases Day logo

Rare Disease Day – February 29th
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A group photo in the evening at a Fragile X International meeting in Lyon, France.

Celebrating International Awareness for Fragile X!
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A photo of a chromosome

Press Release of the Term FXPAC
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A boy with FXS in front of children's books

Changing the FMR1 Name