Ara Parseghian Medical Research Foundation
About this foundation whose goal is to find a cure for the devastating Niemann-Pick Type C disease.
GeneReviews: Niemann-Pick Disease Type C
Summary, diagnosis, clinical description, differential diagnosis, management, genetic counseling and molecular genetics.
International Center for Types A and B Niemann-Pick Disease
Provides information on the prevention and treatment of this disorder for patients, physicians and scientists.
International Niemann-Pick Disease Alliance
An alliance of non-profit support organisations who are associated with the rare group of genetic diseases known collectively as Niemann-Pick Disease.
Niemann-Pick Disease Type C public awareness campaign in honor of Jacob Quinn DeMeis. Includes information on the disease and on Jacob's short life.
National Niemann-Pick Disease Foundation
Provides in depth education and support for patients and families. Also information about the foundation itself.
Niemann Pick Patients
UK charitable organisation offering support and information to families affected by Niemann-Pick diseases and to associated health and social care professionals.
Information sheet on this disease including what it is, treatment, prognosis and research being done.
Think Again Think NP-C campaign
Aiming to reduce the time to diagnosis by supporting healthcare professionals who are unfamiliar with NP-C to recognise the key signs and symptoms of the disease.
“Our bid to raise awareness of our son’s disease”
The BBC reports on a campaign to raise doctor’s awareness of Niemann-Pick type C.