FEDERG was established in May 2012 at the 49th ERA-EDTA congress in Paris and was constituted on 22 May 2014 as a non-profit association in Belgium.


There are two types of membership:

  1. Full members are either federated organisations (i.e. European organisations specific to a condition or national federations), or national organisations of the European Union focused on a condition.
  2. Associate members are associations, groups of patients, parents, persons or informal groups dedicated to the cause of genetic diseases which may or may not fall under a European statute.

How to become a member

Organisations wishing to apply for Full or Associate membership are invited to contact the Secretary.

An annual membership fee is payable.

Annual General Meeting

FEDERG holds an Annual General Meeting (AGM) to:

  • review achievements
  • approve the yearly report and accounts
  • agree a budget for the next year
  • appoint and discharge FEDERG members and Board members


The FEDERG Board is elected by the Members. The Board appoints the officers. The following were appointed at the 2023 AGM:

President: Ms Tess Harris (PKD Charity UK)
Vice President: Mr Francisco Monfort (ASHUA)
Treasurer: Mr Michel Schenkel (AIRG-BE)
Secretary: Mrs Susana Carjaval Arjona (Hipofam)
Mr Juan Carlos Julián Mauro (ALCER)
Mr Karl-Heinz Steinecker (AIRG-France)

The Board holds meetings six times a year and all Members are invited to attend.

Scientific Council

The role of the Scientific Council is to:

  • provide advice and recommendations to the FEDERG in matters of research support for projects, funded or supported by FEDERG
  • promote communication between research groups and professionals of health across Europe and the rest of the world, in order to ensure maximum visibility of research, avoid duplication and advance knowledge at the best pace possible
  • be proactive in generating research proposals and soliciting funds for projects carried out by scientific groups including members of the Scientific Council (in such a case, special attention will be required to avoid any conflict of interest)
  • be involved at European level in the organization of conferences on rare and/or genetic kidney diseases
  • ensure a strong liaison with the professionals on scientific issues and to interact more efficiently on health policy and ethics.

Finance & transparency

FEDERG is funded by membership subscriptions and unrestricted donations or grants.

FEDERG is a registered NGO on the European Commission’s Transparency Registry.

The FEDERG Board has adopted two ethical policies: