FEDERG reviews and updates their strategy at its annual meeting
FEDERG, Federation of European Patients’ Groups Affected by Rare/Genetic Diseases, a member of the EKPF, met in Valencia to review the organisation’s strategy to achieve its objectives. The meeting was hosted by the Spanish Atypical Haemolytic Haemolytic Uremic Syndrome Association (ASHUA), which will soon celebrate its international awareness day (24 September). Among the points of analysis discussed at the meeting were:
– To be the voice of national patient groups on genetic/rare kidney diseases.
– Lobbying to eliminate inequalities in care and discrimination across the EU
– Empowering and empowering national patient groups
– Drawing the attention of European authorities to the need to encourage research into genetic kidney diseases
– Support researchers in their work
– Facilitate the dissemination of information by any means deemed useful on all aspects of genetic kidney diseases
– Maintain permanent contact with key stakeholders
