Justin Hopkin, MD, Board Chair for the National Niemann-Pick Disease Foundation (NNPDF) talks about the changes their foundation has made to keep their families connected and informed during the Covid-19 pandemic.

Dr. Hopkin is the father of a child with Acid Sphingomyelinase Deficiency (ASMD), also referred to as Niemann-Pick types A and B. 

Niemann Pick disease is a group of rare genetic disorders in which toxic levels of lipids accumulate in the spleen, liver, lungs, bone marrow, and brain. Niemann-Pick disease is divided into four main types: type A, type B, type C1, and type C2, based on the genetic cause and the signs and symptoms of the condition.

As Dr. Hopkin explains in this video, the foundation has been adapting to the pandemic in a number of ways to help families stay informed and connected.  

For more information about this and other genetic disorders, go to checkrare.com/genetic-conditions/