International Niemann–Pick Disease Alliance

ASMD NP-B Enzyme Therapy: Luiz Henrique

img-20170106-wa0009Just last week we happily reported that three year old Isadora, had became the first patient of her age to receive enzyme therapy for ASMD Niemann-Pick disease type B. This tremendous news filled everyone connected to the INPDA with a sense of  renewed hope and positivity.

But Isadora is not alone, she is also joined by Luiz Henrique (pictured) who is part of the same enzyme therapy research taking place at the Research Centre of Hospital de Clínicas, in Porto Alegre. 

According to the Head Research Co-ordinator, Dr. Roberto Giuliani (of Rio Grande do Sul Federal University) Luiz was the first patient from the Southern Hemisphere to receive such a therapy – a remarkable achievement indeed, and something the family are very proud of!

Luiz Henrique’s parents, Daison Bacovicz Bueno and Núbia Jaqueline are incredibly appreciative of this opportunity, and have noted that they “thank God every day for Luiz Henrique, [and hope for] good results  in the therapy.”

We are happy to report that Luiz and Isadora are doing incredibly well; we will of course keep you updated with any and all developments as the therapy progresses. 

Everyone at the INPDA wishes them the very best going forward!

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