INTERVIEWS
Mucopolysaccharidosis: having a rare lysosomal disease
On the occasion of World Mucopolysaccharidosis Day, a rare lysosomal pathology, we spoke with Jordi Cruz, director of the MPS Lysosomal Association, and with Chema, a patient with this disease who, through his story, shows that life is undoubtedly a matter of attitude.
World Nursing Day: the link that transforms hospital care
Interview with Miguel Ángel Tremiño, Internal Medicine nurse at the General Hospital of Elche, in charge of treating adult patients with rare diseases, to give visibility to the important role played by this profession with patients with rare diseases.
What is thalassemia and how do you live with it?
On the occasion of World Thalassemia Day, we spoke with Secundino Sacristán, a patient with thalassemia major and president of ALHETA (Spanish Association for the Fight against Hemoglobinopathies and Thalassemias).
What does it mean to have Pulmonary Hypertension?
Interview with Enrique Carazo, president of the FCHP (Foundation against Pulmonary Hypertension) on the occasion of World Pulmonary Hypertension Day.
Fabry disease: the clinical voice
On the occasion of Fabry Disease Awareness Month, we close the month of April by talking to Dr. Javier Limeres, cardiologist at Vall d'Hebron Hospital, specialist in this rare lysosomal pathology.
The importance of diagnosis
The World Day of People without Diagnosis wants to make visible the difficulties faced by the thousands of people who still do not have a clear diagnosis for their condition. In this context, we spoke with Estrella Mayoral, social worker and head of the direct care axis at the Spanish Federation of Rare Diseases(FEDER), about the crucial role of the organization in the care of these cases.
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.
