AELMHU, represented by its director, Marian Corral, has participated in the IV International Scientific Congress: "Advances in motor neuron diseases: Familial Spastic Paraparesis and others", organized by the Spanish Association of Familial Spastic Paraparesis.
The congress was held at the headquarters of the Fundación Once in Madrid and was attended by a group of experts led by Dr. María Jesús Sobrido, a specialist in Neurology.
Dr. José Berciano Blanco opened the day with a fantastic presentation on the origin of ataxias and hereditary spastic paraplegias.
The director of AELMHU participated in the first round table of the congress to explain the situation of access to orphan drugs in Spain and had the opportunity to share a table with Dr. Manuel Posada, research professor at the Institute for Rare Diseases Research, who spoke on: "The role of data and sample sharing in the field of international research on rare diseases". Other speakers included the lawyer Álvaro Lavandeira, professor of Law and president of IFSA, who spoke about patients' rights, and Milena Peraita, representative of the Spanish Agency for Medicines and Health Products (AEMPS), whose presentation focused on compassionate use medicines and pharmacological repositioning.
