Fragile X Syndrome across the lifespan with a focus on Genetics, Neurodevelopmental, Behavioral and Psychiatric Associations: A new systematic review Read the original article by Ann C. Genovese and Merlin G. Butler A recently published systematic review describing the genetic foundations of FXS and the identification of associated developmental, behavioral, and psychiatric conditions over the…
To read the full article, please click on the link It is a huge step forward for FraXI, to have published proceedings. We are very grateful to Prof Gaia Scerif who made this possible through a grant from her University (Oxford). “The aim of this Congress was to bring together clinicians and researchers working in the area…
Click here to read the full article Study finds no association between FMR1 premutation and either ADHD or anxiety Introduction A research project analysing data collected from 53,707 women undergoing genetic testing for family planning purposes has found no link between the presence of the FMR1 premutation and either ADHD or anxiety. The study consisting…
If you have an idea and wish to fundraise for us, please let us know by emailing info@fraxi.org or filling out our Contact form. Maybe there is a Challenge event or a marathon, a local competition or a bake sale you would like to do for FraXI, all ideas welcome! #XK4FragileX Our upcoming fundraiser is…
A FraXI approved Study Please see below information from Adam Whalley, a student doing a Doctorate in Clinical Psychology at the University of Lincoln, UK. He has asked FraXI to advertise his research and invite people to complete his questionnaire. He has completed our FraXI research Protocol and his proposal has been approved by our…
A new systematic review Fragile X Syndrome across the lifespan with a focus on Genetics, Neurodevelopmental, Behavioral and Psychiatric Associations: A new systematic review Speech Development A new study on the relationship between the Fragile X Messenger Ribonucleoprotein (FMRP) and the development of speech and vocabulary in young boys living with Fragile X Syndrome has…
Fragile X International and its members have worked together to publish several papers in recent years. The Joys of Fragile X In October 2024, FraXI led in publishing The joys of fragile X: Understanding the strengths of fragile X and delivering a diagnosis in a helpful, holistic way. This article provides a positive framework for…
New Study on the Relationship Between the Fragile X Messenger Ribonucleoprotein (FMRP) and the Development of Speech and Vocabulary in Young Boys living with Fragile X Syndrome Contributors Stephen R Hooper, John Sideris, Deborah R Hatton and Joanne R Roberts have successfully published a groundbreaking new study titled “The Contribution of FMRP to the Development…
The 8th Re(ACT) Congress and 6th International Rare Diseases Research Consortium (IRDiRC) were held jointly from the 5th to 7th of March 2025 in Brussels. The event is one of the most important and diverse colloquiums for leading experts, advocates and emerging talents in the field of rare conditions research to discuss and share knowledge…
Широм света тренутно има 300 милиона људи који живе са ретким стањем. Од 2008. године Дан ретких болести се обележава на међународном нивоу како би се подигла свест о правичности у друштвеним могућностима, приступу здравственој заштити, дијагнози и терапијама за људе који живе са ретким обољењем. Координира ЕУРОРДИС у партнерству са преко 70 пацијената националне алијансе…
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