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 diseasesOUR video platform
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)
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 videosJoin US
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