Carvajal Arjona's presentation took place during the European Kidney Forum, organized by the European Alliance for Kidney Health (EKHA). Her address combined the perspective of a mother of a young person with familial hypomagnesemia, a rare genetic kidney disease, with her extensive experience advocating for patient rights in Europe.
Carvajal Arjona explained that kidney disease extends beyond medical diagnosis and treatment, impacting emotional well-being, education, work life, and family finances. She highlighted the significant role women often play in caregiving, balancing it with their professional and personal responsibilities, and frequently neglecting their own needs. She stated: “Gender inequalities in kidney health affect both women living with a kidney disease and those who care for affected family members”.
HipoFam views its co-founder's participation in the European Kidney Forum as a crucial opportunity to raise awareness about the needs of individuals with familial hypomagnesemia and their families.
The European Kidney Forum convenes policymakers, healthcare professionals, and patient representatives to discuss kidney health challenges and promote equitable responses. The involvement of patient organizations like HipoFam ensures that not only clinical outcomes but also emotional health and the needs of affected families are considered.
HipoFam concludes: “Because behind every diagnosis, there is a person, a family, and a story worth listening to. And because caring for others should never mean forgetting oneself”.
