About FEDERG
What we do
FEDERG is the non-profit federation of European associations of patients affected by rare and/or genetic kidney diseases.
The challenges families face
Rare and genetic kidney diseases shape quality of life, relationships and family planning. Families often deal with:
- getting a diagnosis, treatment and access to dialysis and transplantation;
- questions about inheritance and pregnancy;
- growing up as a child, teenager or young adult with a chronic disease;
- education, work and social life;
- the psychological weight of living with a lifelong condition.
Our aims
- Represent our members in European and national health policy.
- Share information, improve access to care and support national member groups.
- Encourage patients to take part in registries, studies and clinical trials.
- Contribute to the European research agenda through international collaboration.
Advocacy
We campaign for equal access to high-quality, multidisciplinary healthcare, together with social and psychological support. We represent our members at EU level, on our own or alongside other kidney and rare disease organisations, and at European conferences whenever possible.
Research
FEDERG can support research applications after review by its Scientific Council and can provide letters of support on request. We do not fund research directly, but we encourage members to share the projects they take part in.
Information
Our member organisations publish national information for patients and families. For up-to-date clinical information on rare and genetic kidney conditions, visit ERKNet.