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The association

This association, named French Association of Crigler-Najjar, ( AFCN), declared in Sub-prefecture under Number: 14111627 , works to::

  • raise awareness of this extremely rare genetic disease rare
  • bring moral , material and financial help to the patients affected by this disease, as well as to their families
  • break their isolation, allow their meeting
  • establish a network of exchanges between patients, families, doctors, researchers and other associations, both in France and with the foreign countries, in order to progress in the knowledge and the treatment of this disease –
  • finance any research dealing with the improvement of the life of the patients or their cure

The AFCN is governed by the law 1901 and as such non-profit.

An association of patients and families of patients

  • Created by and for CN patients and their families
  • a very motivated and active board, all the members work in a voluntary way.

Presentation of the AFCN

Video presentation of the French Association of Crigler-Najjar produced by the G2M health sector in collaboration with the AFCN.

An association very closed to their members, who collects and gives informations

  • support, advice
  • hotline
  • meetings
  • periodic newsletters
  • private space to communicate and get informed :
    • private facebook group
    • private space on the website with all the documentations useful for patients
  • participation to a lot of meetings and congres

An association who helps patients and their families

  • different kind of help, material, administrative, etc..
  • improvement of phototerapy in order to provide a better quality of live for the patients before the arrival of a cure by gene therapy or another therapy

Creator, designer an editor of useful documents for patients and their families

  • periodic newsletters
  • healthcare card for CN patients in collaboration with the expert center for CN
  • emergency card (credit card sized) with flashcode
  • leaflet “La maladie de Crigler-Najjar expliquée aux enfants” ’(Crigler-Najjar syndrom explained to young CN patients)
  • collaborated to an online document on Crigler-Najjar syndrom for Orphanet

Who represents the patients and their interests (patients advocacy)

  • intervention with healthcare authorities
  • worked with the ministery of health to obtain a full reimboursement by the social security of the treatment cost

Working with other national health organisations

Centre de référence – Hôpital Antoine Béclère (Clamart)
Filière G2M
Plateforme d’expertise Paris Sud
Membre d’Alliance Maladies Rares
Référencé sur Orphanet
Travail en collaboration avec la Haute Autorité de Santé
Partenariat avec Généthon
et liens étroits avec l’AFM Téléthon

An association who promotes, colaborates and finances research, who launches and gets involved in innovative projects

The association has been able to find and motivate companies to work alongside it.

  • improvement of phototherapy
  • initiated, colaborated and financed the developement and clinical trial of a novative fiberoptic phototherapy device
  • partner in the european gene therapy project CureCN directed by Genethon

Rewards Prix d’honneur accompagnement Handicap. (D&O)

Present on the web and the social media

Web site

International role

  • developped an international network with families, patients organizations, clinicians, researchers, companies
  • hotline in three languages (english, turkish, arab),
  • tprovides help and advice to families abroad