New patient story: Tetrasomy X or 48XXXX syndrome

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 impact on a daily basis. Relationship with the medical profession, family and school impact, importance of preparing well for the announcement of the diagnosis … Christine transmits a maximum of her knowledge about life with Tetrasomy X
Magali’s story on the 48XXXX syndrome is here:
To see our series on guilt and rare disease, it’s here:
Christine’s non profit for patients with rare diseases in Switzerland:
Volunteers for this testimony:
Interviewer: Chantal
Editor: Sonia and Estelle

More video stories soon on EwenLife YouTube and platform

EwenLife is a united team of volunteers who are committed to rare disease patients and their loved ones. 

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The list of all our testimonials:

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