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Ewenlife Rare Diseases Organisation

New patient story: Tetrasomy X or 48XXXX syndrome

1 new Ewen story is available on yourTube and our video platform: Christine on Tetrasomy X Christine – Tetrasomy X The episodes of Christine’s video story on Tetrasomy X or Syndrome 48XXXX are available on our YouTube channel and on our platform. In her story, Christine talks about her daughter’s disease and disability and its…
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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: 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 patient story: Cutis Laxa

1 new Ewen story is available on our video platform and our YouTube Channel: Marie-Claude on cutis laxa Marie-Claude – Cutis Laxa The episodes from Marie-Claude’s interview on cutis laxa are now available on our YouTube channel. In her interview, Marie-Claude talks about her daughter’s pathology, her doctor’s silence, her attempts to best care for her…
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New patient stories: Molar Pregnancies and Sickle Cell Anemia

2 new Ewen stories are available on our video platform and our YouTube Channel: Laure on molar pregnancies Laetitia on sickle cell anemia Laure – Molar Pregnancies The episodes from Laure’s interview on molar pregnancies and trophoblastic diseases is now available on our YouTube channel. In her interview, Laure talks about her miscarriages, the judgements she…
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New patient stories: CFC Syndrome and Phenylketonuria

2 new Ewen stories are available on our video platform and our YouTube Channel: Djamila and Stéphane talk about CFC Syndrom and rare handicap, Amélie, Geraldine and Blaise talk about phenylketonuria Djamila and Stéphane – CFC Syndrom The episodes on Djamila and Stéphane’s story are out now. In their interview, they tell how they adapt their daily life…
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Happy New Year 2021 from our volunteers and EwenLife team

All EwenLife volunteers and team wish you A happy new year 2021 Hope it will bring us a little more serenity than 2020 and much less loneliness. Hoping that many of you will join us in our project “1 rare disease, 1 video testimonial” EwenLife is a united team of volunteers who engage with rare…
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New Testimonials: Ehler Danlos, Arterio-Venous Malformation, Rendu Osler Weber

3 new Ewens testimonials are available on our video platform: Aurélie with Ehler Danlos Hypermobile, Beatrice with arterio-venous malformations, Souleya and Saliha with Rendu Osler Aurélie – Hypermobile Ehler Danlos   Syndrome The 16 #épisodes of the #story of  #Aurélie on how #bienvivre #with #EhlersDanlos #Hypermobile. It’s here: https://bit.ly/2WRFOUL She approaches #Childbirth, #job, #dance, #travelling . For fun, the ep14…
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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 We use our annual donation campaign to highlight our volunteers. Some live with the disease on a…
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