A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, October 16, 2013

Living with Niemann Pick Type B

October is Niemann Pick Disease Awareness Month

So much of this blog is devoted to Type C, the variant that Dan had.  But there are other types.  Below is a booklet published in the United Kingdom about Type B, which is the non-neurological type of Niemann Pick Disease.

I invite my Type B friends to provide their thoughts in the comments (if they want).

A Practical Guide to Acid Sphingomyelinase Deficiency - Niemann Pick-Disease Type B 

ASMD

The Niemann-Pick Disease Group (UK) in tandem with an educational grant from Genzyme, A Sanofi Company, developed this guide with the help of parents and caregivers of children, young people and adults affected by Acid Sphingomyelinase Deficiency (ASMD) NPD Type B. 

A Practical Guide to Living with ASMD Niemann-Pick disease type B (NP-B) aims to provide practical information, reassurance and support to those living with ASMD NP-B. The NNPDF is thankful to the NPD Group UK for making this booklet available to our US and Canadian families. 

1 comments:

Post a Comment

I love hearing from my readers. Please leave a comment to let me know you stopped by. :-)