Rare Barometer H-CARE Survey

As part of our alliance with Eurordis, we are asking all our CMN members to consider taking part in this survey.

Please take a look, this is your opportunity to participate in the new Rare Barometer H-CARE Survey and have your say on the healthcare you receive for CMN.

Have your say on the care you receive for your rare disease!

This is a not-for-profit initiative set up by four European Reference Networks related to genetic tumour risk syndromes, kidney, lung and urogenital diseases, with the support of EURORDIS Rare Barometer Voices. These virtual networks involve healthcare providers across Europe and ensure that medical expertise travels across borders so that patients don’t have to. EURORDIS-Rare Diseases Europe is a non-governmental patient-driven alliance of over 800 rare disease patient organisations from over 70 countries.

Please click here to participate in this short survey. It is available in 23 languages and is open to anyone from any country in the world who is living with a rare disease, as well their family members and caregiverss. The survey should take no more than ten minutes to complete and closes on 29 February 2020.

You can find more information on this survey here.

You will be informed about the results of the survey following your participation and the results will also be shared with decision-makers in order to bring about change for the rare disease community.

Please note that your contact details will be kept in secure storage, only accessible to the research team. All of the information shared is completely confidential and anonymised and complies with the General Data Protection Regulation (GDPR).

Thanks in advance for your participation – the more people who respond and share their experiences, the more powerful our voice will be!

Rare Barometer