EURORDIS Rare Disease & Rare Cancers Survey

 

EURORDIS, through its Rare Barometer programme, has launched a new survey on rare diseases/ rare cancers patients’ experience of treatment. The purpose is to highlight unmet treatment needs.

The results of the survey can be very useful for the advocacy work that EURORDIS do in the field of rare cancers and would complement other survey’s results you may have completed for the organisation before.

EURORDIS have a team of professional researchers, specialised in surveys, who shall be able to conduct a thorough analysis of the responses received.

The survey is available in 23 languages and is intended for patients, their family members and carers. All responses are anonymous and will be kept in secure storage only accessible to their research team.

The survey shall take about 10 minutes to complete: http://bit.ly/eurordis-survey

EURORDIS would like to reach out to all who are affected and ask them to please answer this survey and disseminate it widely to anyone else that you know who may also be affected.

The more results that the EURORDIS team are able to gather the more they shall be able to sort results by:

–       Age group (paediatric cancers vs rare cancers in adult)

–       Countries (or maybe just Western Europe vs Eastern Europe)

–       Type of cancers (or maybe just haematological malignancies vs rare solid tumours)

Please also note that the research team shall be able to come up with tailored infographics, based on our request and needs.

The survey is open until 30 April.

EURORDIS Website: https://www.eurordis.org/