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NPD Family Resources

NPD 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 NNPDF.

The NNPDF is a 501(c)(3) nonprofit organization that funds research toward treatments and a cure for NPD and supports individuals and families affected by the disease.  We count on, and we’re grateful for, your support to do our work.
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First Response to a New Diagnosis
Coping Emotionally with Niemann-Pick Disease
Care Giving Tips
Genetic Counseling
Hospice, Palliative and Respite Care
Your Child’s Education
Legal and Insurance


Additional Information and Resources

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



Other Organizations that Address Niemann-Pick Disease:

Canadian Chapter of NNPDF (Canada)
Niemann-Pick UK (UK)
International Niemann-Pick Disease Alliance (INPDA)
Ara Parseghian Medical Research Foundation (US)
Dana’s Angels Research Trust – DART (US)
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
CaringBridge
National Patient Travel Center – Dedicated to helping patients and their families in need of travel for medical reasons.

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

Healthfinder.gov

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