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
 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases