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Woman kneels in front of water

Middle-eastern mums of children living with FXS: Study reveals daily struggles and harsh truths
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Rare Barometer Survey

Be the Voice of Change: Take the new Rare Barometer Survey
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Website of Rare Barometer Surveys

Results of the Rare Barometer Voice Survey on Diagnosis
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The Future of Genomic Newborn Screening: Screen4Care
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Kirsten Johnson at the 6th International Conference on FXPAC

FraXI at the 6th International Conference on FXPAC
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80 years of progress in FXS research
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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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Woman with FXS working on fine motor skills

A systematic review of non-pharmacological interventions targeting motor difficulties in neurodivergent children
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Dark smokey clouds and fresh looking sky

First-of-its-kind study on Reduced Respiratory Sinus Arrhythmia in infants with the FMR1 premutation
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A person walks along a road in autumn

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
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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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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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Female feet in the water.

Brain network alterations in Fragile X Syndrome
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Boy leaning on a tree

Facial characteristics description and classification – New developments
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Boy with FXS holding a baby

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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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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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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Boy on a pile of lumber.

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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People walking under heavy clouds

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

Changing the FMR1 Name