EURORDIS Template email for Patient Organisations to share with members
Objet : S’inscrire pour rejoindre Rare Barometer Voices
EURORDIS, la fédération européenne pour les maladies rares, lance un projet intitulé Rare Barometer Voices. Grâce à cette initiative, la voix des patients atteints de maladie rare sera mieux entendue en Europe. Vos avis et expériences seront convertis en faits et en chiffres que nous communiquerons aux décideurs européens et autres personnes d’influence qui, ainsi informés des besoins de la communauté des maladies rares en Europe, pourront entreprendre des actions aux conséquences directes pour vous. Ce projet nous aidera également à sensibiliser plus encore la population sur le quotidien avec une maladie rare. Pour ajouter vos avis et expériences à la voix des patients atteints de maladie rare, inscrivez-vous à Rare Barometer Voices. Une fois inscrits, vous recevrez un courriel vous invitant à participer à chaque nouvelle enquête en rapport avec les sujets qui vous concernent. Sélectionnez librement les enquêtes auxquelles vous souhaitez répondre. Les réponses à ces enquêtes sont strictement confidentielles et restent la propriété d’EURORDIS, organisme à but non lucratif, qui n’en fera aucun usage commercial.
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