Useful Links

Find a Centre of Expertise (Europe)

European Network for the Study of Adrenal Tumours (ENS@T)

Professional Medical Association that grants Centre of Expertise status to hospitals in Europe


Other ACC Organisations in Europe


Patient association in Germany that covers ACC (but not exclusively)


Patient association that covers ACC (but not exclusively)


The “Association surrenales” (Surrenales = adrenals)


  • 3 newsletters per year addressed to members.
  • Organization, in the different regions of France, of information and support meetings for the patients and their relatives, with the collaboration of endocrinologists and pediatric endocrinologists of Reference Centers and / or Competence Centers.
  • 1 General Assembly per year with the participation of specialists in the adrenal glands.
  • Creation of leaflets and guides for patients:  Addison’s disease / Cushing Syndrome / Congenital hyperplasia of the adrenal glands /Corticotropic Insufficiency / The good use of Lysodren / Phéochromocytomas and paragangliomas
  • Reporting and distribution of medical documentation validated by Reference Centers and Competence Centers.
  • Follow-up on current Research Projects.
  • Regular collaboration with the Reference Centers labeled by the Ministry of Health and the Competence Centers appointed by the Regional Agencies of Hospitalization within the framework of the Rare Diseases Plan 2005/2008.
  • Active participation in the rare diseases Firendo network


Li Fraumeni Syndrome (genetic cause of ACC)

The George Pantziarka TP53 Trust – UK-based organisation

Click here to go to the website