Rare and/or genetic kidney diseases can impact the quality of life and relationships of a whole family including reproductive/family planning matters. Although each condition has its own distinct clinical consequences and patient experiences, there are similarities in:
- Diagnosis, treatments, access to dialysis and transplantation
- Inheritance/genetic transmission, decisions about pregnancy
- Difficulties in growing as a child, teenager and young adult
- Social life, educational and working conditions
- Psychological, emotional burden
- Represent FEDERG patient group members in the development of European and national public health policies.
- Provide access to information and care, enabling and empowering the national FEDERG patient groups who support the affected adults, children and families.
- Encourage patient participation in registries, studies and trials.
- Contribute to the European research agenda for treatments and cure through international collaboration.
Advocacy and representation
We advocate for equal access for all patients to top quality, multidisciplinary healthcare and social/psychological care access for affected families.
We represent our members either directly at EU level or collaboratively with organisations representing patients and families affected by chronic kidney conditions or rare diseases.
Where possible, we represent our members at European conferences and meetings. Members are encouraged to promote their FEDERG membership where relevant and may use the FEDERG logo.
FEDERG is willing to support research applications, subject to approval by our Scientific Council. Please contact us if you are looking for a letter of support.
Many FEDERG members participate in national and European research projects and are encouraged to share this information with FEDERG for dissemination to all members.
FEDERG is unable to award research funds directly to researchers.
Information and care for patients and families
Our members publish information for the patients and families they support within their own countries. Visit our members’ websites for details.
For updated information on all rare and genetic kidney conditions, please visit ERKNet (European Kidney Reference Network)