AELALD is growing and transforming

AELALD is growing and transforming

4 Nov, 2025 | blog

We are pleased to inform you of an important step in the evolution of our organization: AELALD has officially changed its name to LAL-D Patient Organization (LAL-D PO), following the approval of the amendment to our statutes and its registration with the National...
Interview that Somos Pacientes Did with @Eduardolopezsantamaria

Interview that Somos Pacientes Did with @Eduardolopezsantamaria

2 Oct, 2025 | blog

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. “𝘞𝘪𝘵𝘩...
Where would you like your baby to be born?

Where would you like your baby to be born?

2 Oct, 2025 | blog

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

LAL-D CONNECT: a New Future for LAL-D

2 Oct, 2025 | blog

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 is...