Rare Barometer survey on rare disease patients’ experience of COVID-19

Are you affected by a rare disease or a caring for someone affected by a rare disease?

This survey has now closed.

 

The survey will only take around 15 minutes to answer and will help EURORDIS to understand your experience of the COVID-19 pandemic.

We will share the overall results of the survey with you and communicate them (without communicating your individual responses) to decision-makers.

The goal is to voice the specific needs of rare disease patients’ in relation to the COVID-19 pandemic and to propose practical solutions to ensure rare diseases patients are taken into account when handling the pandemic.

By collecting information on how the COVID-19 pandemic is affecting patients’ care, social care, employment situation and mental health, we will be able to better understand the impact of this unprecedented situation.

Your contact details and any written records of your responses during the study will be kept in secure storage which only the research team can access.

If you have any questions while taking part in this survey, you can contact rare.barometer@eurordis.org.

If you want to get an insight into the questionnaire prior to responding to the survey see this document.

COVID-19 survey communications toolkit

Spread the word and encourage your members and networks to make their voice heard and respond to the survey. Use the communnication materials on this page

Page created: 17/04/2020
Page last updated: 19/05/2020
 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases