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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases