INTERVIEWS

30-10-2024

Interview with Rosa Perez, president of the Spanish Association against familial chylomicronemia and patient of this rare disease.

On the occasion of the World Day of Familial Chylomicronemia Syndrome (FQS) we spoke with Rosa Perez, president of the Spanish Association against Familial Chylomicronemia and patient of this rare disease.

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23-10-2024

Interview with Sonia Fernandez, president of the Spanish Association of Inherited Rickets and Osteomalacia Patients Association (AERYOH).

Coinciding with the World Day of X-linked hypophosphatemia, we talked to Sonia Fernandez, patient of this same pathology and current president of the Patients Association Spanish Association of Inherited Rickets and Osteomalacia (AERYOH), to tell us, first hand, what this rare pathology involves and what it means to live with it.

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18-10-2024

Interview with Dr. Montserrat Morales, Coordinator of the Adult Unit for Rare Diseases and Inborn Errors of Metabolism at the Hospital Universitario 12 de Octubre in Madrid.

On the occasion of World ASMD Awareness Day, we spoke with Dr. Montserrat Morales, Coordinator of the Adult Unit for Rare Diseases and Inborn Errors of Metabolism at the Hospital Universitario 12 de Octubre in Madrid, to hear from a clinical point of view what it means to suffer from this pathology.

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04-10-2024

Interview with Dr. Begoña Polo, medical expert in Familial Intrahepatic Cholestasis.

We spoke with Dr. Begoña Polo, from the pediatric gastroenterology and hepatology department of La Fe Hospital in Valencia, on the occasion of World Familial Intrahepatic Cholestasis Day, to understand what it means to live with this rare disease.

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01-10-2024

Interview with Dr. Torralba and Marisol Prieto, clinician and Gaucher patient, respectively.

On the occasion of World Gaucher Disease Day, we interviewed Dr. Miguel Ángel Torralba, expert in this lysosomal pathology, and Marisol Prieto, patient and president of the Spanish Association of Patients and Relatives of Gaucher Disease (AEEFEG).

GAUCHER-RD
30-09-2024

Interview with Dr. Cristina Pascual, president of the Spanish Group of Immune Thrombocytopenia (GEPTI).

We spoke with Dr. Cristina Pascual, president of the Spanish Immune Thrombocytopenia Group (GEPTI), a working group of the Spanish Society of Hematology and Hemotherapy (SEHH) and hematologist at the Hospital General Universitario Gregorio Marañón, who gives us a detailed view of what it means to live with ITP.

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20-09-2024

Interview with Cristina Pascual, expert in hematological diseases and treasurer of the Spanish group of Apheresis (GEA).

We interviewed Cristina Pascual, expert in hematological diseases and treasurer of the Spanish Group of Apheresis (GEA), a working group under the Spanish Society of Blood Transfusion and Cell Therapy and the Spanish Society of Hematology and Hemotherapy (SEHH) on the occasion of World Acquired Thrombotic Thrombocytopenic Purpura Day, known as PTTA.

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12-09-2024

Interview with Peter Löffelhardt MPN, President of MPN Spain

We interviewed Peter Löffelhardt, patient of polycythemia vera and president of the Asociación de Afectados por Neoplasias Mieloproliferativas MPN, MPN Spain, on the occasion of the International Day of Myeloproliferative Neoplasms (MPN), which is celebrated this Thursday, September 12.

News Peter Löffelhardt, President of the Patient Association MPN Spain (1840 x 1000 px)
09-09-2024

Interview with Elena Arcega, president of Albi España

"As part of World Primary Biliary Cholangitis (PBC) Day, we spoke with the president of the Albi Spain Patients' Association, Elena Arcega."

COLANGITIS
08-12-2020

Interview with Álvaro Hidalgo, President of the Weber Foundation

"A more holistic economic evaluation of orphan drugs is needed" Álvaro Hidalgo. Professor of Fundamentals of Economic Analysis. Faculty of Legal and Social Sciences, University of Castilla-La Mancha. President of the Weber Foundation.

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