For those with HCU - Experience of diagnosis and patient satisfaction https://www.hcunetworkaustralia.org.au/experience-of-diagnosis-and-patient-satisfaction/
Rare Barometer Voices is a community of people living with a rare disease who are willing to participate in EURORDIS-Rare Diseases Europe surveys and studies.
EURORDIS, the European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations. EURORDIS represents the voice of an estimated 30 million people living with a rare disease in Europe.
Rare Barometer Voices is a EURORDIS initiative that aims to make the voice of rare disease patients stronger. The objective is to transform your opinions and experiences about topics that directly affect you into figures and facts that can be shared with a wider public.
Please follow the link to register https://www.eurordis.org/voices