OURS MEMBERS – FEDERG

“Federation des associations de patients atteints par une maladie rare ou d’origine génétique” – Federation of European Associations of Patients Affected by Rare and Genetic Kidney Diseases – is not just a formality. It reflects the unique identity, needs and challenges of the people we represent.

WELCOME TO FEDERG

My name is Susana, and I am honored to serve as President of the FEDERG Federation. I am also the mother of a child living with a rare genetic kidney disease—familial hypomagnesemia with hypercalciuria and nephrocalcinosis—who was recently the recipient of a kidney transplant.

I am a co-founder of the Spanish Association for Familial Hypomagnesemias and have represented patients at the European level for more than ten years, first through FEDERG and later within ERKNet, the European Reference Network for Rare Kidney Diseases. FEDERG has been, and continues to be, one of the main providers of patient representatives to ERKNet.

Together with highly experienced patient representatives from diverse European organisations, we believe that working united we can truly drive change for the rare kidney disease community—especially at a key moment aligned with the global Action Plan on Rare Diseases and the World Health Assembly Resolution.

My commitment is to help identify and clearly describe the unmet needs across rare and genetic kidney diseases, so that patients’ voices guide research, healthcare and policy.

Unity is our strength. We invite you to discover our work and join us in shaping a better future for people living with rare and genetic kidney diseases.

Susana Carvajal Arjona. FEDERG president