Jadi Suara Perubahan: Ambil Tinjauan Barometer Jarang yang baharu
FraXI teruja untuk mengumumkan bahawa EURORDIS kini menjemput ahli kami untuk mengambil bahagian dalam yang baharu Tinjauan Barometer Jarang 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).
Kami menggalakkan semua keluarga dan orang yang tinggal dengan FXS untuk mengambil bahagian. Kami akan diberikan keputusan FXS, yang boleh dibezakan mengikut negara jika terdapat maklum balas yang mencukupi daripada mana-mana satu negara.
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.
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