A life  Like Others
with
Rare Disease

Discover EwenFlix

Online videos dedicated to each rare disease

EwenFlix is an on-demand video plateform for people affected by rare diseases and their family. Find on EwenFlix testimonies of patients, family or health professionals to better understand and live with rare diseases.

EwenFlix is Here

65 diseases available on EwenFlix

Who are wE ?

EwenLife Rare Diseases wants to give the best of digital technologies to rare diseases patients and their helpers

Our Projects

EwenFlix Rare Diseases

To break the patients solitude, EwenLife created a video plateform dedicated to rare diseases. On this plateform named EwenFlix EwenFlix (https://app.ewenlife.org), there is :
  • Small explanatory videos of the disease to share.
  • Testimonies of patients affected by rare disease
  • Videos to help with your administrative process.
  • Association’s members interviews.
  • Interviews of professionals(psychologist, lawyer…)

Watch Now

The Ewen Community

An Ewen is a patient affected by rare disease or a close relation. He/She testifies on videos of his/her everyday life on EwenFlix. He/She also gives advice to live in the best condition possible with his/her rare disease. Ewens have the mission to create together a content. A content which ends solitude and the lack of understanding of rare diseases.
Like them,

  Join us

The team

A reknown technical expertise with close experience to the rare disease


We are a close team of 25 volunteers. We have a high expertise known in data security, networks resilience, project management and communication.
We are also 5 facing rare disease everyday. This double skill allows us to work efficiently for 2 years with patients associations, rare diseases experts and institutions.

Jérôme Duvernois

Secretary

Estelle Dubois-Vignal

President

Françoise Duteil

Treasurer

Sarah Smith

Communication

Sébastien Rauber

Technical Supervisor

Julie Chin a Fon

Recruitment

Dally Kane

Digital Marketing

 

Latest Posts

Contact us to participate in the EwenLife adventure contact@ewenlife.org