변화의 목소리가 되어주세요: 새로운 희귀 지표 설문조사에 참여하세요
프랙시는 이제 유로디스의 회원들을 새로운 이벤트에 초대합니다. 희귀 지표 설문 조사 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).
모든 가족과 FXS 환자들이 참여할 것을 권장합니다. 한 국가에서 충분한 응답이 있을 경우 국가별로 FXS 결과를 차등하여 제공할 수 있습니다.
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.
도와주세요 - 설문조사에 참여하세요 여기!
