To mark International Porphyria Patients Day, celebrated on May 18, we interviewed Fide Mirón, president of the Spanish Porphyria Association (AEP), to learn about the challenges still facing the treatment of these conditions and the important role of patient advocacy groups.

To mark World Hereditary Angioedema Day, the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) interviewed Soledad Travesedo, a patient with hereditary angioedema and an active member of the Spanish Association of Familial Angioedema (AEDAF), to learn firsthand what it is like to live with this rare disease.

To mark World Undiagnosed Patients Day, we at AELMHU interviewed Dr. Francesc Palau, distinguished researcher at Sant Joan de Déu Hospital and the SJD Research Institute, group leader at CIBERER, and scientific coordinator of Orphanet Spain, to discuss one of the fundamental pillars in the field of rare diseases: diagnosis.

To mark European Alpha-1 Day, we interviewedMariano Pastor, president of the patient association Alfa-1 España, about the importance of early diagnosis in managing this condition and the vital role played by patient organizations.

To mark National Cystic Fibrosis Day, we interviewed Esther Quintana, president of the Spanish Cystic Fibrosis Society (SEFQ), an adult pulmonologist, and head of the Cystic Fibrosis Unit at the Virgen del Rocío University Hospital in Seville, and Pedro Mondéjar, president-elect of the SEFQ, a pediatric pulmonologist and head of the Cystic Fibrosis Unit at the Virgen de la Arrixaca University Clinical Hospital in Murcia.

To mark World Primary Immunodeficiency Week, AELMHU interviewed Pere Soler Palacín, head of the Pediatrics Department at the Vall d’Hebron University Hospital and president of the Barcelona PID Foundation, to discuss the main challenges in addressing these conditions.

In observance of World Hemophilia Day, celebrated annually on April 17, AELMHU interviewed Lara Formariz, president of the Vizcaya Hemophilia Association (AHEVA), a member of the Spanish Hemophilia Federation (FEDHEMO), and a member of its Women’s Commission, to reflect on historical barriers, current challenges, and the progress made for women living with these conditions.

To mark World Pompe Disease Day, which is observed on April 15, we interviewed Manuel Cobos, treasurer of the Spanish Association of Pompe Patients (AEEPOMPE), who offers a comprehensive perspective—drawing on both personal experience and technical expertise—on the current challenges, the progress made, and future priorities for people living with this condition.

In observance of World Cushing’s Syndrome Day, celebrated annually on April 8, we interviewed Florina Tudorache Serbanica, 46, a patient with Cushing’s disease, who describes the condition as “an invisible thief” that stole her former life. Here is what she said: “For me, Cushing’s has been like an invisible thief who stole the life I had before the surgery”.

Interview with Dr. Roser Torra, president of the European Renal Association (ERA), head of Clinical Nephrology and coordinator of the Hereditary Kidney Diseases Unit in the Department of Nephrology at the Fundació Puigvert in Barcelona, on the occasion of Fabry Disease Awareness Month.