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. โ๐๐ช๐ต๐ฉ ๐ด๐ฐ ๐ง๐ฆ๐ธ ๐ฑ๐ข๐ต๐ช๐ฆ๐ฏ๐ต๐ด, ๐ช๐ต ๐ช๐ด๐ฏ’๐ต ๐ฆ๐ฏ๐ฐ๐ถ๐จ๐ฉ ๐ต๐ฐ ๐ญ๐ฐ๐ฐ๐ฌ ๐ช๐ฏ๐ธ๐ข๐ณ๐ฅ; ๐ธ๐ฆ ๐ฉ๐ข๐ท๐ฆ ๐ต๐ฐ ๐จ๐ฐ ๐ฐ๐ถ๐ต ๐ข๐ฏ๐ฅ ๐ฃ๐ถ๐ช๐ญ๐ฅ ๐ข ๐ค๐ฐ๐ฎ๐ฎ๐ถ๐ฏ๐ช๐ต๐บ ๐ฃ๐ฆ๐บ๐ฐ๐ฏ๐ฅ ๐ฐ๐ถ๐ณ ๐ฃ๐ฐ๐ณ๐ฅ๐ฆ๐ณ๐ด,โ he states. And that is precisely what AELALD has been doing for years: weaving an international network of contacts, scientific collaboration, and mutual support among families around the world.
You can read the full interview at:
