Sharing to move ahead

Research team

Directive team

Dr. Jaume Pérez Payarols
Director of Innovation and Research Department - Hospital Sant Joan de Deu de Barcelona
We research in the present, to the best quality of care for children with rare diseases, to find a cure in the close future.

Graduate of Medicine, specialized on Pediatric Oncology. Since 2008 Director of Innovation and Research Hospital Sant Joan de Deu de Barcelona (HSJD).
Dr. Francesc Palau
Director of the Paediatric Institute of Rare Diseases-Hospital Sant Joan de Deu de Barcelona
Research and promote knowledge to cure and improve the lives of people.

Doctor of Medicine (University of Valencia) and CSIC Research Professor. Specialist in Pediatrics and Head of Genetics and Molecular Medicine HSJD. Scientific Director of CIBERER.
Dr. Mercedes Serrano Gimaré
Principal investigator of Rare Commons and coordinator of the medical team of the Hospital Sant Joan de Deu
Internet allows with little help from each of us, collect an amount of information that had never before been possible to have. The suffering of our patients with rare diseases and their families justifies try, prove and find new ways of research to meet your needs.

Doctor of Medicine from the University of Barcelona. Children neurologist at Hospital Sant Joan de Déu de Barcelona. CIBERER researcher. Master in Neuropaediatrics. Master in Neuroscience and Master in Behavioral Biology. Medical collaborator of www.guiametabolica.org

Researchers

Joana Claverol Torres
Coordinator of the Clinical Trials Unit of the Hospital Sant Joan de Deu
Research with families and patients is the only possible way to advance in the knowledge of rare diseases, also for clinical research and in relation to the promotion and development of clinical trials.

Degree in Biology, Masters in Clinical Trial Monitoring and Master in Pharmaceutical Marketing.
Dr. Jordi Anton
Coordinator of the Paediatric Rheumatology Unit
As professionals we must not only give the best medical attention possible, we also have a responsibility for improving the knowledge of the disease. The use of new technologies and the availability of safe social networking is a way to get closer to patients and their families and also a way to develop research projects.
Paediatrician specialising in Paediatric Rheumatology, Hospital Sant Joan de Déu. A Doctor of Medicine. Associate professor at Barcelona University. President of the Spanish Society of Paediatric Rheumatology.
Dra. Rosa Bou Torrent
Paediatrician specialising in Paediatric Rheumatology
Professionals, patients, and families, we have the opportunity to take advantage of the new technologies to share and enrich the knowledge of rare diseases and establish new lines of research. Because research is the hope of a better future for patients.
Associate Clinical Member of the Unit of Paediatric Rheumatology
Dra. Estíbaliz Iglesias Jiménez
Associate Clinical Member of the Unit of Paediatric Rheumatology
Families and doctors, together, can go ahead to advance in the knowledge of rare diseases.
Paediatrician specialising in Paediatric Rheumatology, Hospital Sant Joan de Déu. A Doctor of Medicine. Coordinator of the working group of juvenile dermatomyositis in the Sociedad Española de Reumatología Pediátrica (SERPE).
Dr. Jaume Català
Medical specialist in pediatric oftalmology (retina and vitreous).
The strength of our patients and their families and working together will help us move ahead better understand and solve blindness.

Medical specialist in pediatric oftalmology at Hospital Sant Joan de Déu de Barcelona.
Dr. Larisa Suárez Ortega
Medical specialist in pediatric endocrinology.
The incentive to contribute actively on the research and in the search for answers, it is crucial to move forward.

Medical Assistant. Section of Endocrinology. Hospital Sant Joan de Deu de Barcelona. Master in Pediatric Endocrinology. With dedication in Type 1 diabetes, cystic fibrosis, and in the endocrinological follow-up of children with rare diseases such as Lowe syndrome.
Dr. Marta Morales
Medical specialist in pediatric oftalmology.
The use of new technologies in medicine helps us to provide an extensive database to better understand and better treatment of rare diseases.

Medical specialist in pediatric oftalmology at Hospital Sant Joan de Déu de Barcelona from 1998 specializing in the medical and surgical treatment of congenital and infantile cataracts.
Dr. Joan Prat
Jefe del Servicio de Oftalmología Hospital Sant Joan de Déu de Barcelona.
New technologies will be a great help to advance the understanding of rare diseases. We can share knowledge among patients and physicians. We must take advantage.

Medical specialist in pediatric oftalmology (oculoplastics and orbit).
Dr. Alejandra Darling
Medical specialist in pediatric neurology.
Patients with neurological disorders and their families inspire me every day in my work. The study of neurodegenerative diseases, allows us to gain a better understanding of them, to search for new therapeutic options. Working in partnership with patients and their families is a great experience, where we all learn.

Medical resident. Degree in Medicine and Master in Neuropaediatrics. Currently, PhD on neurodegenerative diseases with iron accumulation in the brain (ENACH).
Dr. Anna Llorca Cardeñosa
Medical specialist in pediatric ophthalmology.
The communication between different healthcare professionals and patients' families is always needed in the health sector, and especially important in the case of rare diseases. We work together to extend their knowledge.

Medicine Specialist in Ophthalmology. Currently, Master of Pediatric Ophthalmology at the Hospital Sant Joan de Deu.
Dr. Victor de Diego Almarza
Medical specialist in pediatric neurology.
Patients and families with rare diseases are an example of excellence and vitality. Working with them to improve their quality of life is a great personal and professional satisfaction.

Medical resident. Degree in Pediatrics. In the present Master in Neuropediatria, preparing his doctoral thesis on congenital disorders of glycosylation (CDG).
Dr. Silvia Mª Meavilla Olivas
Medical specialist in Gastroenterology, Hepatology and Nutrition.
We need close cooperation of clinicans and families. So we get, together, a greater awareness of rare diseases, allowing us to offer more appropriate treatments that improve the quality of life of patients.

Medical specialist of the section of Gastroenterology, Hepatology and Nutrition. Hospital Sant Joan de Deu de Barcelona. Master in Gastroenterology, Hepatology and Nutrition. Collaborating member of the metabolic unit, and the unit of cystic fibrosis.
Dr. Jaume Colomer Oferil
Neurologist of Neuromuscular Pathology Unit of the Hospital Sant Joan de Deu de Barcelona
The collaboration between clinical medicine and other disciplines such as pathology, biochemistry and genetics is essential for the advancement of science.

Bachelor of Medicine and Surgery from the Universitat de Barcelona. Doctor of Medicine from the University of Barcelona. Pediatric specialist by the Universitat Autónoma de Barcelona. Specialist in Neurology at the Universitat de Barcelona. Head of the Pathology Unit of the Serbian Neurology Neuromuscular until 2012. Researcher CIBERER (Unit 703).
Dr. Andrés Nascimento
Children neurologist at Neuromuscular Pathology Unit.
Listen carefully to our patients and their families is the only way to really know rare diseases, they are our best teachers and we owe all our dedication, working together we can improve the treatment of these diseases.

Children neurologist of Central University of Venezuela. Master of Neuropediatrics by the University of Barcelona (UB). Specializes in neuromuscular diseases in paediatric patients.
Joaquin Ángel Fagoaga Mata
Pediatric physical therapist
Research on rare diseases, improving the quality of life of those affected and their families.

Pediatric physiotherapist of the Rehabilitation Service of the Hospital San Juan de Dios. Master in Physiotherapy and Scientific Evidence. Author of several articles on rating scales in neuromuscular disease.
PhD in Physiotherapy on Validation of Rating scales in neuromuscular disease and quality of life of those affected and the primary caretakers of neuromuscular diseases.
Dr. Antonio Federico Martinez Monseny
Attending physician in clinical genetics and collaborator of the Institute of Paediatric Rare Diseases
Create, innovate and investigate are pillars of modern medicine and especially in the context of rare diseases. Families need and we can help.

Attending physician in clinical genetics and collaborator of the Institute of Paediatric Rare Diseases of Hospital Sant Joan de Déu.

Research technician

Begonya Nafria Escalera
Project manager. Innovation and Research Departament at Hospital Sant Joan de Déu
Social networks allow the international dimension of research on rare diseases. Now more than ever, is the time to move forward in the generation of biomedical knowledge that affects the quality of life of children and their families.

Research technician. Degree in Educational Sciences. EHealth specialist with extensive experience in the field of social networks and virtual communities for patients. Patient Expert in Medicines Research and Development (EUPATI).