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Family Resources

Information for Families

The National Niemann-Pick Disease Foundation supports individuals and families affected by Niemann-Pick Disease.  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.

This website is continually updated, but if you don’t find what you’re looking for, contact the NNPDF.

The NNPDF is a non-profit, unbiased advocacy and family support organization dedicated to supporting and empowering patients and families affected by Niemann-Pick disease, through education, collaboration and research. 
Caregiving Tips
Circle of Care Guidebook
Comprehensive Care Centers
Coping Emotionally with Niemann-Pick Disease
First Response to a New Diagnosis
Genetic Counseling
Hospice, Palliative and Respite Care
Legal and Insurance

Neurological Reviews: Challenges of lysosomal storage disorders need not dishearten the nonspecialist
NPC Patient Handbook: My Health Handbook & Emergency Information
Your Child’s Education

Additional Information and Resources

National Institutes of Health (NIH)
Organizations Addressing Other Lysosomal Storage Diseases
Other Organizations that Address Niemann-Pick Disease
Rare Disease Organizations
Resources for NPD Families
U.S. Department of Health and Human Services
U.S. Social Security Disability
Other Links

Other Organizations that Address Niemann-Pick Disease:

Niemann-Pick Canada (Canada)
Niemann-Pick UK (UK)
International Niemann-Pick Disease Alliance (INPDA)
Ara Parseghian Medical Research Foundation
Dana’s Angels Research Trust – DART
Firefly Fund
Quinn Madeleine Foundation
Wylder Nation Foundation

Argentina – Niemann-Pick Argentina
Australia – Australian NPC Disease Foundation
Brasil – Associação Niemann Pick Brasil – ANPB
China – China Niemann-Pick Disease Association
France – Vaincre Les Maladies Lysosomales
Germany – Niemann-Pick Selbsthilfegruppe
Italy – Associazione Italiana Niemann Pick
Japan – Niemann-Pick Disease Type C of Japan
Netherlands – Volwassenen Kinderen en Stofwisselingsziekten
Poland – Stowarzyszenie Charych na NPC i choroby pokrewne
Spain – Fundacion Niemann-Pick de Espana
Switzerland – Niemann Pick Suisse

Resources for NPD Families

Family Voices
National Patient Travel Center – Dedicated to helping patients and their families in need of travel for medical reasons.
Patient AirLift Services (PALS) – A non-profit charitable aviation organization that arranges free flights for individuals requiring medical diagnosis, treatment or follow-up, or for compassionate assistance.
Pfrieger’s Digest by Frank Pfrieger – Provides an overview of the latest advances in Niemann-Pick disease based on recent scientific publications.

National Institutes of Health (NIH)

Learn About Clinical Trials
Clinical Trials by Disease or Disorder
NIH National Library of Medicine
NIH Office of Rare Diseases
National Institute of Neurological Disorders and Stroke

U.S. Department of Health and Human Services

U.S. Social Security Disability

Disability Benefits Help

Organizations Addressing Other Lysosomal Storage Diseases

National Tay-Sachs & Allied Diseases Association
National Gaucher Foundation
The Hide & Seek Foundation for Lysosomal Disease Research
International Advocate for Glycoprotein Storage Diseases
Lysosomal Disease Network

Rare Disease Organizations

National Organization for Rare Disorders (NORD)
NORD’s Patient Assistance Programs
Eurordis – European Organization for Rare Diseases
Rare Connect – Connecting Rare Disease Patients Globally
Orphanet – Rare Diseases and Orphan Drugs

Other Links

Pick’s Disease

11/14/2016 jjb