OURS MEMBERS - FEDERG

“Fédération des associations européennes 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 Fédération des associations européennes de patients atteints d’une maladie rare ou d’origine génétique. 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, Hipofam, and have represented patients at the European level for more than ten years, first through FEDERG as a member then as a Board member 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

FEDERG Board 2026-2029

Sandra Lawton was born with a rare genetic kidney disease and experienced a prolonged diagnostic journey before receiving the correct diagnosis at the age of 35. As her disease progressed, she developed advanced kidney failure, requiring dialysis and ultimately a kidney transplant. Her personal experience as a patient led her to become actively involved in advocating for people living with genetic kidney diseases, and she subsequently became President of AIRG France. In this role, she represents the patient voice among healthcare professionals, researchers and institutions, working to improve access to information and earlier diagnosis, support patients and families, promote research, and ensure that patients’ priorities are taken into account in healthcare and therapeutic development. Her advocacy also extends to the wider rare disease community, through her participation in scientific meetings and patient networks. She also serves as Vice-president of the FEDERG Board, contributing to the organisation’s activities and to the representation of patient and rare disease perspectives at an international level.

Kristel Heyndrickx is President of AIRG-Belgique and became involved in patient advocacy through her personal experience as the mother of two daughters, the youngest of whom was diagnosed with Alport syndrome at the age of two and a half. More than 12 years ago, while looking for reliable information and contact with other families facing similar challenges, she discovered AIRG, which became an important source of support and information for her family. This experience led her to become actively involved in the organisation and, subsequently, to take on its presidency, with a particular focus on extending AIRG-Belgique’s reach to patients and families in Flanders. In her role as a patient representative, she works to provide reliable information and emotional support to patients and relatives, facilitate connections between families and healthcare professionals, raise awareness of genetic kidney diseases, and ensure that patients’ experiences and needs are represented in discussions around care, research and access to innovative treatments. She also participates in broader patient-engagement activities; Orphanet lists her as the head of the patient organisation, and she has contributed to Belgian initiatives involving patient expertise and access to healthcare. She also serves as Treasurer of the FEDERG Board, contributing to the organisation’s activities and to the representation of patient and rare disease perspectives at an international level.

Giulia Nutile is a physician specialised in Medical Genetics and a member of A.S.AL. (Associazione Sindrome di Alport), the Italian patient organisation dedicated to people and families affected by Alport syndrome. Her professional activity combines expertise in rare genetic diseases with a strong commitment to patient-centred care and advocacy. She contributes to initiatives aimed at improving awareness, diagnosis, multidisciplinary care and support for people living with Alport syndrome, while fostering collaboration between patients, families, healthcare professionals and researchers. She also serves as Secretary of the FEDERG Board, contributing to the organisation’s activities and to the representation of patient and rare disease perspectives at an international level.

Flavia Galletti is a patient representative and a board member of AIRP – Associazione Italiana Rene Policistico, the Italian patient organisation supporting people and families affected by polycystic kidney disease, including ADPKD and ARPKD. Her involvement in patient advocacy is rooted in her personal experience, as both her children and her husband are living with ADPKD. She has therefore developed extensive experience in representing the needs and priorities of families affected by polycystic kidney disease and in building bridges between patients, healthcare professionals, researchers and patient organisations. Since 2019, she has also been involved as an ePAG representative within ERKNet, contributing the patient perspective to European networks and initiatives on rare kidney diseases. She is currently President of PKD International, the global alliance bringing together patients, healthcare professionals and organisations working on polycystic kidney disease, and is also an experienced FEDERG representative. In these roles, she actively advocates for patient-centred care, improved diagnosis and access to appropriate treatments, patient involvement in research and clinical guidelines, and stronger collaboration across the European and international rare kidney disease community. She also serves as board member of the FEDERG Board Directors, contributing to the organisation’s activities and to the representation of patient and rare disease perspectives at an international level.