INTERVIEWS
Living with Fibrodysplasia Progressiva Ossificans Ossificans Progressiva
- On the occasion of World Fibrodysplasia Ossificans Progressiva (FOP) Day , we spoke with Patricia Marín, secretary of the Spanish Association of Fibrodysplasia Ossificans Progressiva(AEFOP), Sonia Las Heras, president of the Association and Alejandro, her son, a patient, along with Patricia, of this rare pathology. In addition to their voice, the more clinical testimony of Javier Bachiller, a rheumatologist at the Ramón y Cajal Hospital in Madrid, was added.
Interview with Daniel-Aníbal García, president of the Spanish Federation of Hemophilia (FEDHEMO).
On the occasion of the celebration of World Hemophilia Day on April 17, we spoke with Daniel-Aníbal García, president of the Spanish Federation of Hemophilia(FEDHEMO) and patient of this same pathology, to discuss the present and future of this disease.
Interview with Cristina and Nacho, parents of a patient with Pompe disease.
On the occasion of the celebration of World Pompe Disease Day, we spoke with Cristina and Nacho, parents of Sara, a Pompe disease patient, to learn about the daily challenges they face as a family in their struggle to provide their daughter with the 'simplest' life possible.
Interview with Sandra Martín (MPS) and Dr. Mónica López, expert in Fabry disease.
Throughout April, Fabry Disease Awareness Month is commemorated. We talked to Dr. Mónica López Rodríguez, head of the Internal Medicine Section at the Ramón y Cajal Hospital in Madrid, and Sandra Martín, member of the Board of Directors of MPS Lisosomales and patient of this disease, to tell us, first hand, what it means to live with this rare disease.
Interview with Naca Pérez de Tudela (AELIP) and Dr. David Araújo-Vilar, physician specialized in lipodystrophies.
On the occasion of World Lipodystrophy Day, we talked to Naca Pérez De Tudela Cánovas, president of the International Association of Relatives and People Affected by Lipodystrophies (AELIP), and the endocrinologist David Araújo-Vilar, a physician specialized in this field, to tell us what these low prevalence diseases are and the importance of patient associations in addressing them.
Interview with the spokeswomen of the AELMHU working groups.
In the framework of the International Women's Day to be celebrated tomorrow, March 8, we want to give visibility to the female talent in the pharmaceutical industry and more specifically, to the female talent in the Spanish Association of Orphan and Ultra Orphan Drug Laboratories (AELMHU).
Interview with Juan Carrión, president of the Spanish Federation for Rare Diseases (FEDER).
On the occasion of World Rare Disease Day, celebrated on February 28th, Juan Carrión, president of FEDER, tells us first hand about his campaign for this edition 'pERsonas'.
Interview with Isabel María Sarabia, Social Worker of the Association for Rare Diseases D'GENES
We talked to Isabel María Sarabia, social worker of the Rare Diseases Association D'Genes in the framework of the celebration, this January 24, of the International Alagille Syndrome Awareness Day.
Interview with Isabel Motero, director of the Spanish Federation of Rare Diseases (FEDER).
On the occasion of World Depression Day, we talked to Isabel Motero, director of the Spanish Federation of Rare Diseases (FEDER), to tell us from her experience, the importance of mental health in patients with minority pathologies.
Interview with Dr. Jorge Francisco Gómez Cerezo Jordi Cruz, Chief of the Internal Medicine Department at the Infanta Sofía University Hospital and Coordinator of the Minority Diseases Group of the Spanish Society of Internal Medicine (SEMI).
On the occasion of World Doctors' Day, we spoke with Dr. Gómez Cerezo, head of the Internal Medicine Department at the Infanta Sofía University Hospital and Coordinator of the Minority Diseases Group of the Spanish Society of Internal Medicine (SEMI), one of the key figures in the field of rare diseases in our country.
