New testimonial: Atypical Rett syndrome

Ewenlife Rare Diseases Organisation

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 pathology and the polyhandicap of his daughter, his vision of his role as a father, the couple and the siblings … And especially how he and his wife decided not to revolve around illness anddisability!
All of Nicolas' testimony about Rett syndrome is here: https://bit.ly/2VbMm3o
To review our series on guilt and rare disease, it's here: https://bit.ly/3o2iCiA
Volunteers for this testimony:
Interviewer: Rosa
Editor: Estelle

 

More testimonials soon on the EwenLife platform

 

EwenLife is a united team of volunteers who are committed to 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

Devenir Bénévole

Leave a Reply

Your email address will not be published. Required fields are marked *