A life  Like Others
Rare Disease

Our EwenLife video platform

In September 2019, EwenLife created an on-demand video platform dedicated to rare diseases. There are:

Short videos explaining the disease to share with those around you

Patients stories concerned by rare disease

Videos to help with administrative procedures

Interviews with patients, relatives, associations

Interviews with professionals (psychologist, lawyer, social workers)

We also produce an every year web series on a subject common to all rare diseases

OUR video platform

91 diseases available

Our mission

EwenLife Rare Diseases is a non caritative association created in 2017. Her mission is to break the isolation linked to rare disease through video

The EwenLife Project

7000 rare diseases, 7000 stories

EwenLife was created by 4 relatives of patients with rare diseases. As the whole of this community, we have experienced isolation.

And some nights, for lack of clear information, we searched anxiously for data about rare pathology. Especially information on how to live with the disease.

The aim of our platform is to break the isolation of patients and their loved ones through video stories. With one goal: to better live the daily life with rare disease and the associated disability.

But also better understand these diseases, often genetic, and difficult to apprehend. It’s also a desire to create stories from expert patients or caregivers.Video stories that viewers can draw inspiration from.

We have devised a crazy project: to collect or produce video stories for each of the 7000 rare diseases referenced within 6 years.

The Ethics Committee

A set of experts to guide us to the best content

Ewenlife asked several professionals from the socio-medical world to help us on a voluntary basis.

Their mission is to address ethical issues related to the content of the EwenLife platform. It hosts:

1 Rare Vascular Disease professor  (CHU de Bordeaux)

1 Psychology professor specialised in “genetic diseases” (Pitié Salpétrière)

2 social workers specialised in rare diseases (Necker Hospital)

1 lawyer

2 patient associations

1 training manager

The Ewens community

Collecting stories of patients or relatives on 7000 rare diseases requires to gather around us the whole ecosystem of rare diseases: patients, families, relatives, associations but also socio-medical professionals.

Such a project involves creating a community of people willing to tell their stories or search for existing videos on the web. These people who testify we call them the Ewens. And by June 2020, there were 50.

Whether you are patient, caregiver, association or professional, join us for this crazy project. Without you, we will not be able to do it.

Contact us by email on our English or French Facebook page.


Technical expertise, human sensitivity and knowledge of the disease experience

We are an association of 50 volunteers (July 2020). For many, we combine a strong digital , marketing, communication competence and a daily experience with the disease.

Our volunteers also include geneticists and members of the rare disease networks. But also film professionals and former journalists

This competency allows us to work daily for 2 years with patients, families, associations, medical and social experts and institutions.

We work in collaboration with Rare Diseases info services and the Rare Diseases Foundation.

Volunteers around the Ewens

To produce poour stories, we designed an interview methodology. We also set up 5 min video formats that are very easy to watch. A story corresponds to an hour and a half of interview, which we divide into a dozen videos. These videos are then subtitled and translated into English or French. Producing and editing these stories is only possible with the help of volunteers willing to conduct interviews edit videos subtitle videos translate videos

Join US

Our latest articles

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[…]


The new EwenLife series is coming: dedicated to young people but not only …

The new EwenLife series is coming! In response to the many young people who contacted us during the lockdown. Because why, in 1 year, research has found for Covid? And[…]


Thank you for running with families affected by rare disease and disability

On June 12 and 13, the EwenLife virtual run/walk took place to raise awareness about isolation related to rare diseases and disabilities Thank you for running with them Thank you[…]


Contact us to join the EwenLife project contact@ewenlife.org