Comprehensive NPC Booklet for Physicians
The NNPDF has available a comprehensive booklet about NPC, written with the physician and other health care providers in mind. The booklet, called “Understanding Niemann-Pick disease type C and its potential treatment,” was 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 publication.
The booklet includes a summary of our current understanding of the disease processes based on research, as well as a summary of the clinical symptoms of the disease, genetics, diagnosis and treatment strategies. Please note: this publication is designed for health care providers so may be a bit technical for some families.
If you would like a copy, please contact the NNPDF, being certain to include your mailing address. A limited number of copies are available.
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. This includes information on clinical and scientific findings regarding all types of Niemann-Pick Disease, research centers and participation, diagnostic and genetic testing, clinical trial information, educational support materials, family-directed brochures, and a resource page.
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 Web site.