Month: September 2021

Ewenlife Rare Diseases Organisation

The new EwenLife series is coming: dedicated to young people but not only …

The new EwenLife series is coming! In response to the many young people who contacted us during the lockdown. Because why, in 1 year, research has found for Covid? And why research does not find for their rare diseases? Treat me, are you thinking about it? And when is my treatment? During the first confinement,…
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Thank you for running with families affected by rare disease and disability

On June 12 and 13, the EwenLife virtual run/walk took place to raise awareness about isolation related to rare diseases and disabilities Thank you for running with them Thank you to everyone who participated in the EwenLife virtual solidarity run/walk to raise awareness about the isolation of families affected by rare disease and disability. We…
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New testimonial: Glut1 Deficiency

1 new testimonial from Ewen is available on our video platform: Magali on Glut1 Deficiency Magali – Glut1 deficiency Episodes of Magali’s testimony on Glut1 Deficiency are available on our YouTube channel and on our platform. In their testimony, Magali talks about her son’s deficit and its impact on a daily basis. Epileptic seizures, ketogenic…
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New testimonial: Syndrome Charge

1 new testimonial from Ewen is available on our video platform: Nathalie and Julien on the Syndrome Charge Nathalie and Julien – Syndrome Charge The episodes of Nathalie and Julien's testimony on the Charge syndrome are available on our YouTube channel and on our platform. In their testimony, Nathalie talks about managing her schedule as…
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New testimonial: Atypical Rett syndrome

1 new testimonial from Ewen is available on our video platform: Nicolas on his daughter's Rett Syndrome Nicolas – Atypical Rett syndrome Finally a father's testimony! Episodes of Nicolas' testimony on his daughter's atypical Rett syndrome are available on our YouTube channel and on our EwenLife platform. In his testimony he tells us about the…
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New testimonial: what EwenLife brought me

1 new Ewen patient story is available on YouTube and our video platform: Christelle with Meige syndrome The impact of EwenLife patient stories Christelle tells us about her diagnosis of Meige syndrome and her expectation. She had no explanation from the medical profession and found herself without landmarks. She then came across Marie-Anne’s EwenLife video…
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New family story: Neurofibromatosis type 1

1 new Ewen family story is available on our video platform: Aurélie on Neurofibromatosis type 1 Aurélie – Neurofibromatosis type 1 Episodes of Aurélie's story on neurofibromatosis are available on our YouTube channel and on our EwenLife platform. In her video story she tells us about the pathology of her daughter and herself. From diagnosis…
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