成為改變的代言人：參加新的稀有晴雨表調查
FraXI 很高興地宣布，EURORDIS 現在邀請我們的會員參加新的 稀有晴雨表調查 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).
我們鼓勵所有 FXS 患者家庭和人士參與。我們將獲得 FXS 結果，如果任何一個國家有足夠的回應，則可按國家區加以區分。
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.
請幫忙 - 進行問卷調查 這裡!
