INTERVIEWS
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.
LHON: the importance of rare disease patient organizations
On the occasion of World Leber Hereditary Optic Neuropathy (LHON) Day, we interviewed Guillermo Yriarte, president of ASANOL.
Cystic fibrosis: achievements and remaining challenges
On the occasion of World Cystic Fibrosis Day, which is celebrated every year on September 8, we interviewed Juan Da Silva, president of the Spanish Federation of Cystic Fibrosis (FEFQ), who reviews the evolution of the group, the achievements made and the challenges still pending in addressing this disease.
What is Familial Mediterranean Fever
On the occasion of Autoinflammatory Diseases Month, we spoke with Cuca Paulo, president of Stop FMF (Spanish Association of Familial Mediterranean Fever and Autoinflammatory Syndromes).
