INTERVIEWS
Dra. Mª Luz Couce: "El cribado neonatal salva vidas. Tenemos que seguir mejorándolo"
Coincidiendo con la celebración del Día Mundial del Cribado Neonatal, entrevistamos a la Dra. María Luz Couce, directora científica del Instituto de Investigación Sanitaria de Santiago de Compostela (IDIS), referente nacional e internacional en enfermedades metabólicas hereditarias y una de las voces más autorizadas en este campo.
“Donating blood saves lives”: the reality for people with thalassemia
Interview with Massimo Lugas, president of the Spanish Association for the Fight Against Hemoglobinopathies and Thalassemias (ALHETA) on the occasion of World Blood Donor Day.
Porphyria: The Emotional and Social Impact of Rare Diseases
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.
The Importance of Patient Experts in Rare Diseases
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.
616874, the code for people with undiagnosed rare diseases
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.
Alpha-1 Deficiency: The Importance of Earlier and More Accurate 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.
Cystic Fibrosis: A New Reality in Childhood and Adulthood
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.
Primary immunodeficiencies: 550 rare diseases of the immune system
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.
Hemophilia in Women: Beyond Being “Carriers”
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.
Pompe Disease: Raising Awareness to Move Forward
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.
