New patient stories: CFC Syndrome and Phenylketonuria

Ewenlife Rare Diseases Organisation

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 for their son’s CFC Syndrom and rare disability.
To hear everything they have to say on CFC Syndrom and rare disability, watch the episodes on YouTube: https://bit.ly/3d43PQ9
Don’t forget to turn on the subtitles!
In their episodes, Djamila and Stéphane address their son’s symptoms, treatment and they talk about his passion for music. They also explain how an organised bike ride with supportive dads saved their child from being kicked out of school.
You can also check out our successful web series on guilt and Rare Disease, here: https://bit.ly/3lMUvUL
Djamila and Stéphane Association: Les Solidad’s https://www.facebook.com/LesSoliDads
Volunteers for this video story:
Interviewer: Estelle
Video editing montage: Estelle

Blaise, Geradine and Amélie – Phenylketonuria

The episodes on phenylketonuria with Blaise, Gerladine and Amélie sharing their experiences are out now!
To hear everything they have to say about phenylketonuria, click here: https://bit.ly/2PgDpCI
Don’t forget to turn on the subtitles!
In their interview on phenylketonuria, they explain how the disease has turned them into food label pros. And low-protein food master chefs.
You can also check out our successful web series on guilt and Rare Disease here: https://bit.ly/3lMUvUL
The phenylketonuria association of our 3 interviewees:
Les Feux Follets:
Volunteers for this video testimony:
Interviewer: Aurélie
Sequencing:  Lise
Video editing montage: Éloise

More video stories soon to be on the EwenLife platform and YouTube channel

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

To support us, subscribe to our Youtube channel: https://www.youtube.com/c/ewenliferaredisease

or check out our platform: https://app.ewenlife.org

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