Become EWEN, share your experience with the rare disease

Ewenlife Rare Diseases Organisation

Become EWEN, share your experience with the rare disease


EwenLife wants to make the most of digital technology for rare disease patients and their caregivers. Notably through its video-on-demand platform: the Ewenflix. An "Ewen" is a person with a rare disease who wishes to testify about his daily life. Being an Ewen is becoming a kind of "youtuber" of the rare disease, our Ewen talk about their experiences: difficulties as successes.

Becoming Ewen means sharing tips, advice to patients and caregivers who follow you.

EwenLife Rare Diseases

EwenLife was founded by 4 parents of children with very different rare diseases. We are now 30 volunteers: mainly technical experts, marketing managers and project managers from large groups and rare disease sectors. Almost all of us live with the rare illness of one of our loved ones.

Our goal is to improve the life and care pathway of patients with a rare disease. To do this we have several projects including the EwenFlix.

Read the article on the Web series Resilience and Rare Diseases


The EwenFlix, a video-on-demand platform100% rare diseases

Become Ewen and rare disease

The EwenFlix is a video streaming tool dedicated 100% to rare diseases, the platform is halfway between a Netflix and a Wikipedia. Its goal is to resolve the social isolation of patients with rare diseases and their loved ones.

The video-on-demand project was born following feedback from patients with rare diseases who felt alone in the face of the disease (feeling isolated). Isolation because these diseases are often misunderstood and frightening. But also because families spend their lives in medical facilities and no longer have time to live.

The EwenFlix is found on L'EwenFlix by rare disease:

– Short explanatory films on the disease

– Patient Testimonials (EWEN)

– Films to help with administrative procedures.

– Interviews with association members

– Tips for sport and leisure (depending on disability)

– Tips for complementary therapies

– Pragmatic interviews with professionals (psychologist, lawyer…)

– Explanations on the progress of research

Our Ewens testify about their daily lives with rare disease

Why become Ewen? 

Become Ewen and rare disease

– Having a community:

  • Exchange, discuss
  • Give tips and tricks on rare disease
  • Offer tutorials
  • Making story time
  • Share his experiences, his exploits, his life, his passions, his difficulties …
  • Be supported

– Meet people who share the same daily life with the rare disease.

– Learn new skills: editing, script writing, social networks, etc.

– Develop a new passion for video.

– Regularly feed the EwenFlix by recording videos on various and varied topics

– Be part of the Ewen community



Learn more


Do you want to become one of our Ewens?

Join the Ewen community on our Facebook group

or contact us:

Contacter EwenLife



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