Under the slogan "¡Avanzamos!", the ASMD Spain association held its II Annual Scientific Family Congress in Segovia.
During the conference, attendees were able to learn more about this rare disease, also known as Niemann Pick, which affects one in every 100,000 people. In Spain it is estimated that there are 40 people with this minority disease.
The meeting, which was held during the week of ASMD World Day, was attended by clinical experts such as Dr. Francisco del Castillo from the Genetics Department of the Hospital Universitario Ramon y Cajal, to talk about gene therapy, Dr. Marta Ruiz de Valbuena, from the Pneumology Department of the Hospital Universitario de La Paz and Dr. Jesús Villarrubia, from the Hematology Department of the Hospital Universitario Ramón y Cajal in Madrid.
Marian Corral, director of AELMHU, took part in the round table held in the last panel of the afternoon, in which the problems of access to orphan drugs in Spain were addressed and discussed. The panel also included Álvaro Lavandeira, professor and lawyer, and Daniel de Vicente, president of AEMD and pharmacist.