The French Ectodermal Dysplasia Association

The AFDE (The French Ectodermal Dysplasia Association): A militant organisation
By Olivia Nicolas, President of the AFDE

The AFDE (The French Ectodermal Dysplasia Association) was founded in 2000 to break down the extreme isolation the families found themselves burried into when learning that their child had Ectodermal Dysplasia (ED). This impression of isolation was emphasized by the fact that the disease seemed little-known and that the experts were rare and hard to find.

Therefore, the first step was to find the affected families, who were way more numerous than the doctors expected.

Over the support groups sessions between parents and affected adults organised by the organisation as well as in informal discussions, numerous symptoms - who seemed related to the disease due to their recurrence - have been identified. For some of these, the AFDE identified the appropriate treatment (ex: scleral contacts for corneal lesion)

The AFDE has made numerous questionnaires to narrow down their knowledge. For the last 10 years, about ten studies have been done (symptoms of the disease, dental condition, dental care records, dental quality of life, adults’ quality of life, progression of the disease, social care, the families’ expectations towards the organisation, satisfaction towards the Referral Center).

Through its more and more frequent contacts with worldwide specialists, the AFDE found out that some dental treatements have been used abroad for several years but that they were not in France.
Besides, this disease is particularly expensive, so the AFDE rallied to improve financial and medical support, especially for dental care.
After several years of activism, the financial support as well as the health care of children have clearly improved. But the adults support and care are not effective yet.
The industry turned out to be a very useful partner because thanks to a deal made between Zimmer and the AFDE, some adults will be implanted this year.
The AFDE is also involved in the development of a cooling vest which is an interesting alternative to air-conditioners (while traveling, at school…) but unfortunately, even though it is finalized, we have not achieved yet to make the health system insurance reimburse it.

Regarding to the lack of financial support, the AFDE supports the families by financing and administrating a fund who has already payed for air-conditioners for fifty families and helps paying the other things related to the disease that families have to pay (travels to see specialists, wigs, breast implants, dentures…)

To relieve the families and improve children’s life, the AFDE organises, finances and manages a summer camp for the children every year. Unfortunately, each camp has led to the finding/discovery of new symptoms, which were immediatly studied and confirmed by Necker Hospital.

In the aim of informing the dentists on the good practice of the dental care and to show them their part in the diagnostic of the disease (in particular with the forme fruste or with the carrier women), the AFDE teaches in many dental faculty every year (exams can be about these courses).

The AFDE has close relationships with some specialists and systematically refer their members toward them to increase their expertise and by doing so to improve the health care of patients.

Therefore, the AFDE initiated the creation of a European federation with the ED organisations who works closely with American and Autralian organisations.
Currently, the AFDE helps creating Belgian and Algerian organisations, both French-speaking and who can benefit from all the informations gathered by the AFDE and from the contacts it already has with the families.

Especially, to that aim, we list the researches in progress in each country and collaborate on some of them. We are currently part of the creation of a project: in 2011 we will start clinical trial who should heal the babies if they are treated from birth. This project brings new hope.
To detect these future babies all over the world, organisations have created a worldwide register which is already online.