Vi anerkender, at alle mennesker med Fragilt X er ligeværdige og har ret til de samme muligheder som alle andre. Vores vision er at hjælpe dem, der lever med Fragilt X-syndrom (FXS), Fragile X Premutation Associated Conditions (FXPAC) og deres familier overalt i verden med at nyde et lykkeligt liv.
Fragile X International er et netværk, hvor magten til at handle ligger i hænderne på dem med FX. FX er ikke en sygdom, men en tilstand: Vi vil fremme social inklusion af FX på alle niveauer i samfundet. Vi vil slå til lyd for, at de, der lever med FXS og FXPAC, ikke skal tilpasse sig samfundet, men at samfundet skal omfavne dem, som de er. For at fremme dette mål opfordrer vi alle vores familieorganisationer til at inkludere mindst én person med FXS i deres bestyrelse.
Mission
Fragile X International er et netværk af nationale familieorganisationer, som vil arbejde sammen om at fremme, støtte og styrke FX-identiteten som en merværdi for samfundet. Vores mål er at øge kendskabet til styrkerne hos mennesker med FXS, fremhæve de områder, hvor de kan have brug for støtte, øge bevidstheden og tilskynde til forskning omkring FXPAC og dele viden i håb om, at FX en dag vil blive anerkendt for den fordel, det giver samfundet.
Uafhængighed
Fragile X International has a policy not to join consortium or co-sponsor clinical drug trials. This is in order to maintain the independence of the patient voice. FraXI represents family organisations and those living with FXS. Our vision and mission is to create a world where all those living with FXS are recognised for the value they bring to society. We support research and work with clinicians, but need to stay appropriately distanced from being directly linked to particular drug trials.
Milestones – A timeline of FraXI
2012
INTERNATIONAL FRAGILE X DAY
The European Fragile X Network initiated International Fragile X Awareness Day on the 10th day of the 10th month: X.X.
2018
NON-MEDICAL INTERVENTIONS
The European Fragile X Network helped modify how the treatment of Fragile X Syndrome is described in Orphanet to emphasise non-medical interventions “Speech, physical and sensory integration therapy as well as individualized educational plans and behavioral interventions”. (https://orpha.net/consor/cgi-bin/OC_Exp.php? Ing=EN&Expert=908)
2020
FXPAC
The country associations worked together to introduce the term Fragile X Premutation Associated Conditions (FXPAC). https://www.frontiersin.org/articles/10.3389/fped.2020.0 0266/full
2022
GENE NAME CHANGE
FraXI representatives led in changing the name of the FMR1 gene and of the FMRP protein.
2022
FRAXI IS LAUNCHED
FraXI formed the first ever internationally-registered Fragile X charity open to all FX organizations (either as full or associate members). We have a Vision! We are sharing our Vision, Mission and Values on our Website: www.fraxi.org. FraXI is working with partners across Europe to develop European guidelines for Fragile X Syndrome.
2023
NEW FRAXI MEMBERS
Fragile X Association Australia and Fragile X New Zealand are new FraXI Full Members. The National Fragile X Foundation (U.S.) is a new FraXI Associate Member.
2024
ADVOCACY AND AWARENESS
- FraXI Congress 2024 in Barcelona, Spain, 7-10 November
- Growing our membership
- Raising awareness on International bodies and leading up to X.X. 2024
- Providing resources and webinars on best practices for our members
2025
We continue to build capacity and welcome new members.
In May 2025 our President spoke at the World Health Assembly side event on the WHA Resolution for Rare Diseases, which was adopted and will lead to a Global Action Plan for rare conditions.
FraXI took part in the International Fragile X Workshop held in Padova, Italy; in the International Fragile X Premutation Conference, Bari, Italy; and in the Neurodevelopmental Disorders Conference, Noordvijk, The Netherlands. At these conferences, we represent the voice of those living with FXS and FXPAC to professionals.
In 2025, our Abstracts of our first FraXI International Congress were published [ hyperlink ]; and we embarked on writing clinical practice FX Guidelines with an international group of clinicians and scientists, to be adopted by ERN ITHACA upon completion.
We continue work on developing a Fragile X Federated Data Platform, to link data sets from around the world in order to further research.
We also have worked with the University of Surrey in launching a survey [hyperlink] to hear the research priorities of those living with Fragile X Syndrome and their families.
