EKHA webinar: From Care to Cure
An EU-wide network advancing rare kidney disease healthcare and research, discussed by patients, clinicians and policymakers.
Practice project, not the official FEDERG website. The official site is federg.org.
Speak up, connect, research and care for rare kidneys.
FEDERG is the European federation of patient associations for people living with rare and genetic kidney diseases.
Nothing great is
made alone
- Member associations
- 20
- Rare kidney diseases
- 150+
- Of genetic origin
- 80%
Our mission
To improve the health and quality of life of people affected by rare and genetic kidney diseases, through advocacy, representation, engagement and collaboration.
- 01
Advocacy
Equal access to high-quality, multidisciplinary care, with social and psychological support.
- 02
Representation
The patient voice in EU health policy, reference networks and European conferences.
- 03
Engagement
Patients who take part in registries, studies and trials, and help shape research.
- 04
Collaboration
Working with ERKNet, EKHA, EURORDIS and others to achieve more than alone.
Member associations
Patient associations from across Europe, working as one
20 associations 8 countries
Spain
- AIRG España
- ALCER
- HIPOFAM
- asHUa
Germany
- ADTKD Vision Cure
- Leben Eben
- aHUS Selbsthilfe
Belgium
- AIRG Belgique
- AIRG België
France
- AIRG France
- Association Polykystose France
Italy
- Associazione Italiana Rene Policistico
- Associazione Sindrome di Alport
Netherlands
- Dutch Community for Dent Disease
- NVN
United Kingdom
- Alport UK
- PKD Charity
Switzerland
- AIRG Suisse
Europe
- Cystinosis Support Network Europe
International
- Cure Lowe Foundation
Latest
News
World Kidney Day 2026
Member associations across Europe marked World Kidney Day with awareness campaigns, family meetings and online talks.
FEDERG at the European Parliament: Safe Hearts, Safe Kidneys
Elevating kidney health on the EU agenda, with a clear message on early diagnosis and equal access to care.
Patient stories
Fictional storyFeatured patient story
Meeting other patients was the moment I stopped feeling like a medical file and started feeling like a person again.
Marta · Alport syndrome · Spain
An invented person. This practice project publishes no real patient data.
Newsletters
Members activities & FEDERG representations
Members activities: Summer issue · No. 2 (PDF on federg.org, opens in a new tab)
Awareness days, family meetings and research news from member associations across Europe.
Open PDF
FEDERG representations: 2026 edition (PDF on federg.org, opens in a new tab)
Where FEDERG has represented patients this year, from EU policy events to reference network meetings.
Open PDF
Is your association working on a rare kidney disease?
FEDERG welcomes national organisations and informal patient groups from across Europe. Together, we are heard.