INTERVIEWS
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).
Sickle Cell Disease Day
We spoke with Rosalía Segura, secretary of the Sickle Cell Disease Association of Spain (ASAFE), and patient, on the occasion of World Sickle Cell Day about the day to day life with this disease, the importance of early diagnosis and the power of the association to not feel alone.
Life with Myasthenia
This June 2 is International Myasthenia Day, a little known date, but fundamental for those who suffer from this rare disease. We spoke with Raquel Pardo, president of AMES, and patient of this same pathology.
Neurofibromatosis: symptoms and psychological involvement
On the occasion of World Neurofibromatosis Day, we spoke with Aitana Aguilera, psychologist of the Association of Affected, to learn about the physical and emotional impact of this rare disease in children and adolescents.
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.
