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A Rare Lysosomal Storage Disease
Contact: info@npcfund.org

Resources



NPC Families

Families who are affected by Niemann-Pick Type C Disease

Brisan and Parker Stults - Living with the
Brisan and Parker Stults live with Niemann-Pick Type C Disease also known as the childhood Alzheimer's. This devastating disease robs children of their childhood and memories! Your help is needed!

Resources & Links

Resources & Links

Alzheimer Research Forum
The Alzheimer Research Forum, founded in 1996, is the web's most dynamic scientific community dedicated to understanding Alzheimer's disease and related disorders. Access to the web site is free to all. Our editorial priorities are as diverse as the needs of the research community. The web site reports on the latest scientific findings, from basic research to clinical trials; creates and maintains public databases of essential research data and reagents, and produces discussion forums to promote debate, speed the dissemination of new ideas, and break down barriers across the numerous disciplines that can contribute to the global effort to cure Alzheimer's disease.
Ara Parseghian Medical Research Foundation
The Ara Parseghian Medical Research Foundation's goal is to find a cure for the devastating Niemann-Pick Type C disease.
Canadian Chapter-NNPDF
The primary goals of the foundation are: To promote medical research into the cause of Niemann-Pick Disease and to find a cure To provide medical and educational information to assist in the correct diagnosis and referral of children with Niemann-Pick Disease To provide support to families of Niemann-Pick Disease patients To encourage the sharing of research information among researchers
CollabRx
CollabRx is a biotechnology company whose goal is to help oncologists develop customized therapies for cancer patients with rare cancers, and those whose tumors are unresponsive to standard treatments. CollabRx was founded in early 2008 to slash the time and cost of therapy development for rare and neglected diseases.
Dementia Guide for Teachers, Parents, and Caregivers
Dementia is something that is usually associated with older people. However, children, teenagers and young adults can experience dementia as a result of a number of rare diseases and conditions. Niemann-Pick Disease Type C is an example of one of these diseases, and one of its main symptoms is dementia.
Family Resources & Support
Our support covers a range of needs that occur at various stages of Niemann-Pick Disease. We offer referrals to assist with diagnosis and treatment of NPD, guidance for care of individuals with NPD, assistance to families caring for loved ones with the disease, educational tools, and even information on insurance matters and legal issues.
Hide and Seek Foundation
Hide & Seek is more than a game. Hide & Seek is a community of people dedicated to finding treatments and cures for a devastating genetic condition called Lysosomal Disease.
Join NNPDF Forum
The NNPDF provides services to all individuals affected by Niemann-Pick Disease regardless of their ability to pay dues. While we ask and hope that families will help the Foundation through personal contributions and fundraising initiatives, we do not require any payment for our services. We hope this opens NNPDF to more individuals and families affected by Niemann-Pick Disease and who share our commitment to find treatments and a cure.
MAYO Clinic
Our mission is to empower people to manage their health. We accomplish this by providing useful and up-to-date information and tools that reflect the expertise and standard of excellence of Mayo Clinic. A team of Web professionals and medical experts working side by side produces this site. Through this unique collaboration, we give you access to the experience and knowledge of the more than 3,300 physicians, scientists and researchers of Mayo Clinic.
National Niemann Pick Disease Foundation
The National Niemann-Pick Disease Foundation supports and promotes research to find treatments and a cure for all types of Niemann-Pick Disease, and we provide support services for individuals and families affected by NPD.
National Organization of Rare Diseases (NORD)
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Newsletter & Family Support NNPDF
Living with Niemann-Pick Disease creates an emotional burden that may be difficult to bear. NNPDF's Family Services Program anticipates and responds to the needs of all individuals dealing with Niemann-Pick Disease. Our goal is to reduce the burden of Niemann-Pick Disease on affected individuals and families.
Niemann-Pick Disease Group (UK)
The aim of the Niemann-Pick Disease Group (UK) is to make a positive difference to families affected by the disease through the provision of Care, Information and Research.
NIH Clinical Trials
ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.
NIH Office of Rare Diseases
The ORDR Web site aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases.
NINDS
The mission of the National Institute of Neurological Disorders and Stroke is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.
Public Library of Science
The Public Library of Science (PLoS) is a nonprofit organization of scientists and physicians committed to making the world's scientific and medical literature a public resource.
The Children's Rare Disease Network
The Children’s Rare Disease Network will create greater public awareness for rare disease, while connecting, educating and empowering the millions of families and caregivers affected, through an online community and collaborative portal.
Web Of Hope
I started Web of Hope to educate people about an inexpensive and non toxic sugar compound called hydroxy propel beta cyclodextrin (HPBCD) and the relationship between cyclodextrin, HIV/AIDS and a rare cellular cholesterol disease my identical twins suffer from called Niemann Pick Type C. You may be visiting Web of Hope after hearing recent news about the sugar compound cyclodextrin in the media.

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