Seien Sie die Stimme des Wandels: Nehmen Sie an der neuen Umfrage zum Seltenheitsbarometer teil
FraXI freut sich, ankündigen zu können, dass EURORDIS nun seine Mitglieder einlädt, sich an der neuen Umfrage des Seltenheitsbarometers 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).
Wir ermutigen alle Familien und Menschen, die mit FXS leben, zur Teilnahme. Wir werden die FXS-Ergebnisse erhalten, die nach Ländern differenziert werden können, wenn es genügend Antworten aus einem Land gibt.
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.
Bitte helfen Sie mit - nehmen Sie an der Umfrage teil hier!
