Physician Services

Update ~ March 2008

"We at the NNPDF are very pleased to let you all know about a new, comprehensive booklet that is now available about NPC. The booklet, called "Understanding Niemann-Pick disease type C and its potential treatment," was written by Jackie Imrie and Dr. Ed Wraith from the United Kingdom NPD program and is sponsored by a generous grant from Actelion Corporation. It is an excellent overview of all aspects of NPC for the physician and other health care providers.

It 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. Because the authors are from the UK,the printed booklet contains a resource list for the UK, but I have updated our NNPDF resource page and will include it with each US mailing. I have only a limited number of copies, so will be happy to send one copy to any family that requests it. Please note: it is designed for health care providers so may be a bit technical for somefamilies. Our intent is that you share it with your child's health care team.

If you would like a copy, please e-mail me directly at catherine.walshvockley@chp.edu. Do not hit the reply button or your
message will go to the listserv. Please include your mailing address in your note to help me more quickly get the booklet delivered to you."

Regards,
Catherine Walsh Vockley

Coodinator of Education, Referral and Advocacy

National Niemann-Pick Disease Foundation, Inc.

Medical professionals who care 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.  Tthe 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 our our web site. .

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