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 voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases