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Information for Healthcare Providers

Information for
Healthcare Providers & Educators

The news concerning treatments for Niemann-Pick Disease is improving but there is still much to do before definitive therapies are available. Just a few years ago, the cause of Niemann-Pick Disease was unknown. Now the genetic sources of the disease have been identified and research is focusing on how the biochemical mechanisms work and how they can be corrected.

Medical professionals who care for those affected by NPD often do not have access to information about Niemann-Pick Disease or other rare disorders, nor do they have the time to search for information given the demands of a busy practice.  The National Niemann-Pick Disease Foundation has compiled a collection of resources on NPD for primary and other health care providers.

NNPDF has also established relationships with clinicians with expertise in all aspects of NPD. These individuals are available to discuss patient-related issues with primary care providers and can be contacted through the Foundation Office.

Contact the NNPDF office if there is information you need but cannot find on our website.

Comprehensive Booklets for Physicians

The NNPDF has available a comprehensive booklet about ASMD and NPC, written with the physician and other health care providers in mind. The booklets entitled Understanding Niemann-Pick Disease Type C and its Potential Treatment and A Guide to ASMD Niemann-Pick Disease Types A and B were written by Jackie Imrie, Clinical Nurse Specialist, and Dr. Ed Wraith, both of the United Kingdom NPD program.    A generous grant from Actelion Corporation sponsored the publications.

The booklets include a summary of our current understanding of the disease processes based on research, as well as a summary of the clinical symptoms of the diseases, genetics, diagnosis and treatment strategies. Please note: this publication is designed for health care providers so may be a bit technical for some families.

A Guide to ASMD Niemann-Pick Disease Types A and B

Understanding Niemann-Pick Disease Type C and its Potential Treatment

03/16/2017 jjb