変革の声になろう：新しいレア・バロメーター調査に参加しよう
FraXIは、EURORDISが新たに会員を招待することを発表します。 レア・バロメーター調査 on what helps you live with with a rare condition (available in 25 languages, worldwide, to all people living with a rare or undiagnosed condition, their family members and carers).
FXSのご家族や患者さんには、ぜひご参加いただきたいと思います。FXSの結果は、ある国から十分な回答があれば、国別に区別することができます。
Past Rare Barometer Surveys have proven to be crucial stepping stones in our journey to create more inclusive and equitable spaces for people living with FXS in research and policy development. This is entirely due to data being collected directly from people with lived experiences of FXS. Now that the survey is back, you will have the opportunity to talk about how you cope with daily stress, which support you can rely on and how you wish to be supported, or how you and your family manage to learn, work, and contribute to your community while living with FXS.
The results will us advocate for tailored solutions for people with FXS and their families to live life to the full and engage meaningfully in daily activities. General survey results will be shared by EURORDIS with participants, patient organisations, decision-makers and the public, raising awareness and advocating for equity.
アンケートにご協力ください これ!
