私たちは、フラジャイルXを持つすべての人が、他のすべての人と同じ価値を持ち、同じ機会を得る権利があることを認識しています。私たちのビジョンは、フラジャイルX症候群（FXS）、フラジャイルX前突症状（FXPAC）を持つ人々とその家族が、世界中どこでも幸せな人生を享受できるように支援することです。
フラジャイルX・インターナショナルは、FX当事者の手に行動力があるネットワークです。私たちは、社会のあらゆるレベルでFXの社会的包摂を促進します。私たちは、FXSやFXPACを持つ人々が社会に適合する必要はなく、社会がありのままの彼らを受け入れるべきであることを提唱します。この目的を推進するために、私たちはすべての家族組織に対して、少なくとも一人のFXS患者を役員に含めるよう奨励しています。
ミッション
フラジャイルXインターナショナルは、FXのアイデンティティを社会の付加価値として促進、支援、強化するために協力する各国の家族組織のネットワークです。私たちは、FXSを持つ人々の強みに関する知識を増やし、サポートを必要とする可能性のある分野を強調し、FXPACに関する認識を高め、研究を奨励し、FXが社会にもたらす利益について認識される日が来ることを願って知識を共有することを目指しています。
独立
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
エフエックスパック
The country associations worked together to introduce the term Fragile X Premutation Associated Conditions (FXPAC). published これ.
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.
FraXI led in the renaming of the FMR1 gene – see our article これ and further info on our website これ.
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; 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 to hear the research priorities of those living with Fragile X Syndrome and their families.
