INTERVIEWS
Lipodystrophies: From Underdiagnosis to a Multidisciplinary Approach
An interview with Dr. Pilar Rodríguez Ortega, a specialist in endocrinology and nutrition at Juan Ramón Jiménez Hospital, onthe current state and future of lipodystrophies, the importance of early detection, and the need to move toward a more coordinated, equitable, and patient-centered care model.
Women in the rare disease pharmaceutical industry: talent and leadership
This Sunday, March 8, isInternational Women's Day. We share the stories of three professionals who are part of the AELMHU Access Working Group and who play key roles in the pharmaceutical industry: María Baquerizo, Country Manager Spain at Avanzanite Bioscience,María Fernández, Director of Market Access and Institutional Relations at Amgen Spain, andSusana Simón, Director of Market Access and Patient Experience atAlexion Pharmaceuticals.
World Rare Disease Day 2026
Interview with Juan Carrión, president of FEDER, on the occasion of Rare Disease Day 2026, to address the main needs and challenges faced by the 3.4 million people with rare diseases in Spain.
ASEM Federation: challenges and advances in neuromuscular diseases
On the occasion of the celebration of the National Day of Neuromuscular Diseases, we interviewed Manuel Rego and Begoña Martín, president and director of the ASEM Federation, to learn first-hand about the challenges, advances and needs of affected people and their families.
NET Spain: a decade of giving voice to patients with neuroendocrine tumors
On World Neuroendocrine Tumors Day, we interviewed Blanca Guarás, president of NET Spain, the patient association that accompanies, informs and gives a voice to those who live with this group of tumors.
Familial chylomicronemia: challenges and approach to this rare disease
On the World Day of familial chylomicronemia syndrome, we interviewed an expert in this rare pathology, Dr. Ovidio Muñiz, head of the Lipid and Vascular Risk Unit of the Hospital Virgen del Rocío in Seville.
Empathy and accompaniment: the keys to DEBRA Piel de Mariposa's work
On the World Day of Epidermolysis Bullosa, better known as butterfly skin, we interviewed Natividad Romero Haro, nurse and coordinator of care and training activities of the DEBRA Butterfly Skin Association.
Hope in the face of PNH: the story of Adriana Reyes
On International Paroxysmal Nocturnal Hemoglobinuria (PNH) Day, we interviewed Adriana Reyes, president of the Spanish PNH Association, who tells us her personal story and the challenges posed by this rare disease.
Progressive familial intrahepatic cholestasis: What is it and what are its causes?
On the occasion of World Progressive Familial Intrahepatic Cholestasis (PFIC) Day, which is celebrated every year on October 5, we interviewed Dr. Maria Mercadal, pediatric hepatologist at the Vall d'Hebron Hospital in Barcelona, with the aim of providing a clear vision of this rare liver disease of genetic origin that mainly affects children.
Homozygous familial hypercholesterolemia: why early diagnosis is key
On September 24, on the occasion of the International Familial Hypercholesterolemia Day, we interviewed Dr. Lluis Masana Marín, one of the most important scientists in the study of this disease both in Spain and internationally.
