EwenLife celebrates its 99 volunteers and appeals for donations

Ewenlife Rare Diseases Organisation

EwenLife celebrates its 99 volunteers and appeals for donations

99 volunteers joined EwenLife Rare Diseases in 2020. EwenLife would be nothing without them. Whether they participate in the life of the association, testify, testify or translate our videos. We can’t thank them enough. 

Volunteers in the spotlight

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We use our annual donation campaign to highlight our volunteers. Some live with the disease on a daily basis. Others did not know the rare disease before joining us.

They helped create our video platform (https://app.ewenlife.org). They interviewed families affected by the rare disease.

They spent hours editing videos. They are working on artificial intelligence solutions.

With a single goal: 7000 video testimonials for 7000 rare diseases.

7000 testimonies to humanize the experience with the rare disease.

7000 testimonies to break the isolation of the rare disease

But 7000 testimonials that require many tools and also the hiring of employees.

So to support our volunteers, we appeal to donations. Donations are 66% of the total in France.

Crucial volunteers in this period of Covid 19

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In this period of Covid 19, rare diseases fall by the wayside. They were not the priority until now. They are even less so.

If EwenLife wants to accomplish its mission in 2021, only volunteers can help break the isolation of the rare disease through your video stories.

Because rare diseases are not a trending topic, because rare diseases are not in the newspapers… rare diseases concern 20% of the population  (patients and caregivers).

Our 99 volunteers have accomplished incredible tasks in 2020. Because we are an active team with a crazy atmosphere.

So imagine if there were more of us. Our goal: 2000 volunteers by 2022. It’s possible!

Join us in 2021. Write to us in contact@ewenlife.org

Volunteers for each country

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In this period of lockdown, 40% of viewers of our platform come from abroad.

Many find themselves in the psychological path of the rare disease.

But the health, social and administrative path varies from country to country.

Video stories are needed in each country on the experience of rare disease. We are therefore looking for Ewens, ready to share in video their experience of the rare disease with their compatriots.

Our goal: an EwenLife in each country.

Join us in 2021. Write to us in contact@ewenlife.org

Estelle Dubois, volunteer

EwenLife is a united team of volunteers who engage with rare disease patients and their loved ones. 

Volunteering

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