The Association Maladies Foie Enfants (AMFE, the French association for liver disease in children) was founded in 2009 by parents of children with liver disease. It funds research into paediatric hepatology and collaborates with medical teams to provide day-to-day support for patients and their families. An interview with Nathalie Bissot Campos, Communications Manager at the AMFE.
What are the objectives and the purpose of the Association Maladies Foie Enfants?
We are an association that supports research into paediatric hepatology, set up in 2009 by the relatives of children with liver disease, who got together to raise the profile of these rare conditions.
We have several objectives: to alleviate the isolation of families, to help obtain an early diagnosis – which is vital for these conditions – and to raise awareness. We also lead campaigns to support research, with the aim of coming up with drugs-based treatments, as opposed to transplant treatment, which is currently the solution.
What tools do you provide for this patient community?
We soon realised that the families of these patients were internet users, so we started a forum for them, a private space for discussion where they can get in touch with each other: they have to complete a questionnaire to access the forum and doctors do not have access to this online platform. The members of the community use it to talk about the condition, inform each other of diagnoses and share their fears and concerns.
They all use the forum to share their experiences and their stories. Above all, it is an environment for providing emotional support, although patients sometimes also help each other with medical matters, eg giving advice on fitting a sick child with a catheter.
The forum is now accessed by an international community, with patients from France, Belgium, Canada, Morocco, and so on.
Apart from your website and this forum, you also use social networks to raise the profile of your campaigns...
We’ve conducted public awareness campaigns on social media to help compensate for our small communications budget. We have set up pages on Twitter (opens in a new window), Pinterest (opens in a new window), Facebook (opens in a new window), LinkedIn (opens in a new window), so that we can communicate with a wider public: our strong social network presence provides us with an information channel, mainly thanks to patients, who are our primary ambassadors and who pass on information or appeals for donations.
We regularly organise online schemes, such as “Un selfie, Un Don [One selfie, one donation], #SmileAMFE”, a social network campaign we conducted in December last year to raise funds and to support children in hospital.
Why are patient communities so important to patients?
Families want to know what advances are being made in research and to keep an eye on future progress for the next children to be affected by the disease. We have fought for years to raise awareness of the colour of stools, a screening check that can help diagnose the disease at an earlier stage. Doctors had only managed to get the Ministry to include an insert in the child health record to raise awareness amongst young parents: through lobbying, our association has been successful in ensuring a colour chart of the first stools is included in the health record and also in maternity records.
We are also in the process of creating five mother and child rooms in Kremlin-Bicêtre for families undergoing long spells in hospital. Although at the outset patient communities may have been a source of concern for medical teams, these days they understand that we have a part to play in public health and we now work hand-in-hand (with centres of excellence and referral centres, specialists in paediatric hepatology etc): producing public awareness documentation and also providing a platform for patients’ voices to be heard more clearly.
Find out more :
[Special Edition] When the patients of the digital age make their voices heard
At the heart of this transformation is the increasing number of patient communities, which are set up and structured using emerging technologies and connected applications.