Niemann-Pick B Patients and Parents Come Together

Alan Gilstrap | January 29, 2013

As part of our commitment to the Niemann-Pick B (NPB) patient community, the Patient Advocacy and Niemann-Pick Program Teams recently hosted a Niemann-Pick B Patient Advisory Board meeting that was attended by 12 patients and parents from across North America. The goal of the meeting was to better understand the diagnosis pathway and to gain insight into the effect that a NPB diagnosis has on individuals and families.

During the one-and-a-half day meeting, participants were able to meet and dialogue with Genzyme representatives from the medical, legal and senior management teams. Members of the senior management team were not only moved by the overwhelming need to move the NPB program forward but also by a community that offered their support. 

One participant summarized the experience in these words:

“Regardless of the outcome, a glimpse of hope can go a long way. I have to be honest and say I have never lived my life by planning for a treatment. I have always kept hope in the possibility of a life where this condition would be treated but I have always chosen to live mostly in the present. But for the first time it was a great feeling to feel and see a tangible possibility, and I am grateful for being given the opportunity to experience that.”
 

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