EURORDIS initiative Survey COVID19 and Rare Diseases

where do we stand now in this pandemic as the unemployment rate has spiked?

The US National Organization Of Rare Diseases (NORD) has sent MEBO an invitation to "Make your voice heard!", a EURORDIS initiative. MEBO is an Organization Member of both these entities.

They invite us all from around the world (IN 23 LANGUAGES) to take a survey for a study which is looking at how we are affected by the COVID19 Pandemic. Their goal is to voice the specific needs of rare disease patients during this medical and economic crisis.

Please let us tell the world about the challenges we face due to this condition.

https://www.sphinxonline.com/SurveyServer/s/EURORDIS75/COVID_INTERFACE/questionnaire.htm

Even though sufferers have customarily had the tendency to live in relative reclusion and social distancing due to odor symptoms of TMAU, and our condition has made employment prospects challenging, where do we stand now in this pandemic as the unemployment rate has spiked?

What other impact has this had on people with uncontrollable odor conditions?

EURORDIS tells us:

Are you affected by a rare disease or a caring for someone affected by a rare disease? Share your experience and tell us how of the COVID-19 pandemic is affecting you by completing this survey.
The survey will only take around 15 minutes to answer.
This survey will help EURORDIS-Rare Diseases Europe, a non-profit and non-governmental alliance of 900+ patient organisations 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 take into account when handling the pandemic.
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, or call our office on +33 1 56 53 52 63.

MEBO Research has been a Member Organization for years of both, NORD and EURORDIS.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
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A EURORDIS and NORD Member Organization