Welcome to the LAL-D Patient Organization (LAL-D PO), the international organization for patients and families affected by Lysosomal Acid Lipase Deficiency (LAL-D).
Our goal is to support families, raise awareness of the disease, advance research, and promote early diagnosis, which is key to saving lives and improving patients’ quality of life.
Since 2015, we have been working to ensure that no one affected by LAL-D feels alone.
Interview that Somos Pacientes Did with @Eduardolopezsantamaria
Here you can see the interview that Somos Pacientes did with @eduardolopezsantamaria, president of the Spanish Association of Lysosomal Acid Lipase Deficiency (#AELALD). From his point of view, when it comes to #UltraRareDiseases, the national scope falls short....
Where would you like your baby to be born?
The answer is not trivial: in Spain, the number of diseases detected in neonatal screening (the so-called "neonatal screening") varies greatly depending on the autonomous community. While 51 diseases are screened for in Galicia and 47 in Murcia, in other...
LAL-D CONNECT: a New Future for LAL-D
Today, we had the opportunity to attend LAL-D CONNECT: A New Future for LAL-D. Updates in the diagnosis, management, and treatment applied to clinical practice, a conference organized by @alexionpharmaceuticals, where we were able to share with attendees what life...