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Raremark® launches survey to uncover daily disruptions to rare disease patients caused by COVID-19 pandemic

London, UK, April 29, 2021– For people who have one or more of the 7000+ known rare diseases, the COVID-19 pandemic has added extra issues to lives that are already complicated.

Raremark’s new survey aims to uncover ways that patients’ and caregivers’ daily lives and hard-fought routines may have changed over the last year. It’s for anyone 18 or older who has a rare disease, and their family caregivers or parents.

There may be worries, for example, about missed appointments with specialists, or problems with medication deliveries. There’s even concern about how the outbreak has affected patients’ levels of trust in their healthcare providers or in the pharma companies that produce their treatments.

“Because some of our Raremark team members either have a rare disease themselves or have experience caring for someone with a rare disease, we feel many of these issues on a personal level,” said Jeremy Edwards, CEO of Xperiome, the parent company of Raremark.

“Just knowing that other people are having experiences right now that are like yours could make a difference in how you’re feeling about yourself, your rare condition, and your treatments and care providers.”

This study is part of a wider initiative by the company to catalog every aspect of daily life with a rare condition. Raremark has named its steadily growing knowledge bank thelived experience of rare disease. This collection of insights is coming from the experts themselves: patients, parents, and caregivers who understand deeply what it’s like to live with a rare disease every day.

Raremark will share its key findings with people who take part in the survey, as well as to the wider healthcare community. These results will help patients, caregivers, and researchers understand the many ways a global pandemic can affect people who are already dealing with life-changing medical problems.

A rare disease is one that affects fewer than 200,000 people in the U.S. and fewer than 1 in 2,000 people in the U.K. The 7,000 known rare diseases affect as many as 400 million people worldwide. Because many of these conditions are hard to diagnose, though, the number of affected people could be even higher.

Anyone interested in taking part in Raremark’s survey can do so here:

Dija Mulla


About Raremark

Raremark is here to inspire an information revolution in rare disease: We’re building a vast knowledge bank that contains the lived experience of people with rare conditions.

To start this revolution, Raremark is crowdsourcing and organizing the wisdom of experts: patients, parents, and caregivers who deeply understand what it’s like to live with a rare disease every day. We believe free access to this information is key to helping everyone better understand, manage, and talk about the rare condition that’s part of their life.

And that’s what our vision is all about: shaping a future where all rare conditions are understood and treated.

Raremark is owned by Xperiome, a global healthtech company focused on connecting people to research studies, to help make treatments available faster. Learn more about Raremark here:



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Facebook Post 1

Survey on Covid-19 and rare disease: Share your experiences with Raremark today! Raremark is running an online survey to find out how much COVID-19 has affected your life or the lives of your loved ones. The COVID-19 pandemic has not only had a practical impact on people living with a rare disease (such as missed doctors appointments) but also an emotional one. Let them know how it has affected you!

#RareDisease #CovidAndYou

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Twitter Post 2

COVID-19 and you!

Take part in Raremark's survey, which looks at how COVID-19 has impacted the lives of people living with a rare disease.

#RareDisease #COVID-19 #CovidAndYou

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COVID-19 survey

People living with a rare disease, and rare disease caregivers, have a voice! Help Raremark understand how COVID-19 has affected you. #COVID-19 #CovidAndYou

Raremark® launches survey to uncover daily disruptions to rare disease patients caused by COVID-19 pandemic

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Last Updated: 07-May-2021