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Links to Other Organizations

This page contains links to other organizations of interest to Niemann-Pick patients, families, and friends. The links on this page are organized into categories. Click on one of the following titles to go to a category. If you know of other sites which would be appropriate for this page or if you find that any of these links don't work, please email us.

Niemman-Pick Family Websites
and Organizations

Information about Niemann-Pick Disease

Search for Medical Information 		Genetics
and Genetic Testing

Equipment, Supplies,
and Resources

Find Support Groups 		Public Forums and Mailing Lists

Disabilities and the Law

Odds and Ends

Disclaimer

Need help getting started? Try our How to Use Links page and review the Cyber Cautions from our Newsletter.

Niemann-Pick Family Websites and Organizations
Family Websites.

Andrew's Field of Dreams
Anna's website New
Baby Jessica New
Cassie's Journey
Dana's Angels
Elliot Lister NPC
Fight for Jessica
For Ryan Richardson
Help Kevin
Hugs for Haley
Jacob's Reach
Jolynne Burns
Lee King Benefit Buddy Tournament
Partners for a Cure . Lee King Benefit Buddy Tournament
Until Then . The CD written for Lee King
Life for Luke
Mantissa Brazil (in Portuguese)
Over the Rainbow
Pick C House Japan (in Japanese)
Sophia's Garden .

Niemann-Pick organizations

The Ara Parseghian Medical Research Foundation
Canadian Chapter of NNPDF. Canada
Fundacion Niemann-Pick de Espana. Spain
Jim Lambright Medical Research Foundation
Niemann-Pick Disease Group (UK). United Kingdom
Niemann-Pick Type B Families .
Niemann-Pick Selbsthilfegruppe . Germany

General Information about Niemman-Pick
 Research centers and informational sites.

Research Centers
Ethnic Database of Jewish Diseases. University of New Jersey Medical School.
International Center for Types A & B at Mount Sinai School of Medicine
Liscum Lab Niemann-Pick Pages Dr. Laura Liscum
Liscum Lab Home Page Dr. Laura Liscum
Lysosomal Disease Center University of California San Francisco and Stanford University.
Mayo Clinic
Niemann-Pick Type A. University of Pittsburgh.
NNPDF Scientific Advisory Board
Pagano Lab Home Page Dr. Richard Pagano.

National Institutes of Health
Clinical Trials . Search for clinical trials by disease or disorder.
Clinical Trial Overview . Background information on clinical trials.
NIH News .

NIH National Institute of Neurological Disorders and Stroke (NINDS)
NINDS Home Page .
Find Professional Societies . NINDS.
Niemann-Pick . Description of NP and other disorders.
NINDS Grants - Applications and Programs .
Press release on the discovery of the NPC1 gene.
Research Articles on NP and other disorders. PubMed and NINDS.

NIH Office of Rare Diseases
Home Page
Research and Clinical Trials . Information about clinical trials.
Resources for Research on Rare Diseases . Information and publications on rare diseases.

National Library of Medicine.
Home Page
Niemann-Pick Types A and B . OMIM database.
Niemann-Pick Type C . OMIM database.
Niemann-Pick Type D . OMIM database.

National Tay-Sachs and Allied Disease Association Inc.
Niemann-Pick page

Rare Genetic Diseases in Children
Home Page

Other than English Language
Please write in English if you have comments about these sites.
l'Association Vaincre les Maladies Lysosomales . France
Fundacion Niemann-Pick de Espana. Spain
Karolinska Institutets Bibliotek . Sweden.
Mantissa. Brazil
Niemann-Pick Selbsthilfegruppe . Germany
Orphanet. France
Societat Catalana de Neurologia, Barcelona . Spain
Universita' degli Studi di Bologna. Italy. Contact information.

Search for Medical Information
Sites where you can search for medical information about symptoms and treatments.

AllRefer Health Encyclopedia New
American Academy of Family Physicians
Atlantic Research Centre . Dalhousie University, Canada
Dr. Greene's Site. Pediatric information from a pediatrician.
Emory University MedWeb
Find Professional Societies . National Institute of Neurological Disorders and Stroke
Food and Drug Administration
Healthfinder . US Government site.
Healthopedia New
Kids with Tubes . A parent site with information about feeding tubes.
General Nutrition Center Healthnotes . Information on the uses and effects of supplements.
IHP Net Health Resources
MedExplorer
PubMed . National Library of Medicine. Abstracts of publications.
Medline Plus . National Library of Medicine. Consumer health information.
MedScape . Registration required (free).
Mediwarp . Search for medical sites or browse a directory of sites.
Radiological Society of North America . A lot of links to medical searches, facilities, colleges, etc.
Yahoo! Health related search engine.

Alternative and Complementary Therapy
Feldenkrais Association of North America
HealthWWWeb
Ketogenic Diet . Stanford University
Music Therapy New
Special Dietary Needs . Tuft's University.

Information on Genetics
Genetic testing and counseling centers. General information on genetics.

Genetics . General resources and information.
Genetics Education Center . University of Kansas Medical Center.
Jewish Genetic Disease Program . Saint Barnabas Health Care System (N.J).
Jewish Genetic Disorders Program . Children's Memorial Hospital. NP Types A and B.
List of Genetic Centers . University of Kansas Medical Center.
Lysosomal Disease Testing Laboratory. Thomas Jefferson University Hospital
Map of the Human Genome . NIH
NPC1 on the Map of the Human Genome . NIH New
Professional Genetic Societies . University of Kansas Medical Center.
Society for the Study of Inborn Errors of Metabolism . United Kingdom
South Australian Clinical Genetics Service . Women's and Children's Hospital, Adelaide

Equipment, Supplies, and Resources
Equipment and Supplies
Able Data. Database of assistive products.
Abilitations. Products to aid development through movement.
All Terrain Pushchairs . Strollers for outdoor activities and older children.
Advanced Respiratory. The Vest is used to help with chronic pulmonary (lung) congestion.
Cycle Tote. Bicycle trailers designed to carry children to young adults.
Discovery Toys. Supplier of eductional toys for children from birth through school age. Many items are appropriate for children with disabilities.
Dragonfly Toys. Toys for children with special needs.
Flag House . Therapy aids, walkers, protective headgear and other special needs equipment.
Funtastic Learning. Toys for children with special needs.
IBM Special Needs. Software for people with disabilities.
Juno . Low cost email and internet.
Protecta Cap . Protective headgear.
Trek Bikes . Bicycle trailers and strollers for children up to 100 lbs.

Resources
Center for Children with Special Needs. Tools for caregivers to help organize vital medical information and records.
Easter Seals Financial Planning Guide . A 72 page booklet on special needs financial planning, including government benefits.
Exceptional Parent Library. Special needs bookstore.
Medical Air Transportation . Contact information.
The Medicine Program . Assistance in purchasing prescription medicine.
Needy Meds . Information on special prescription drug purchase programs by pharmaceutical companies.
NICHCY Publications . Publications on numerous special needs topics, including schooling, parenting, and support.
NICHCY State Disability Resources . Public and private disability related organizations are listed by state.
Respite Care Locator . Find respite care services in your area.

Find Support Groups
The Genetic Alliance
Centering Incorporation . Contact information.
The Compassionate Friends. Bereavement group.
Contact a Family (UK)
University of Kansas Medical Center
Lysosomal Diseases New Zealand
M.U.M.S . Contact information.
National Organization of Rare Diseases (NORD)
NIH Office of Rare Diseases
Re-evaluation Counseling . Also known as Co-counseling.

Disabilities
A.R.C . Developmental disabilities group - contact information.
Foundation for People with Learning Disabilities
J. P. Das Developmental Disabilities Centre. University of Alberta, Canada
Family Village - Disability Related Resources
Special Child - for and by parents of children with special needs.

Parenting and Families
Exceptional Parent Magazine . Parenting a child with a disability.
Parent Helping Parents
Parents Place has a wide range of parenting topics
Parenthood Web
Sibling Information Network . Contact information.
Taryn's World - And Welcome To It ! Designed for kids.

Wish Fulfilled
Children's Wish Foundation International
Children's Wish Foundation of Canada
Make-A-Wish Foundation of America
National Make-A-Wish
Other children's wish groups . Contact information.
Sunshine Foundation

Use Public Forums

Gaucher disease mailing list
G-Tube mailing list . Feeding tubes.
G-Tube mailing list . St John's University List.
Index of ListServ mailing lists
Neimann-Pick Mailing List . National Niemann-Pick Disease Foundation
Public Forums . Massachusetts General Hospital

Disabilities and the Law
ABA Children's SSI Project . American Bar Association legal assistance.
Americans with Disabilities Act
The Individualized Education Plan (IEP) LD Online New
Parents Guide. Schwab Learning New
National Council on Disability

Odds and Ends
Image of spleen cells affected by Niemann-Pick . (33K) University of Illinois Medical School.
Joke of the Day links . Reduce stress - exercise your endorphins!
Map of NNDPF members
Other resources to consider
Scottish Rite Children's Medical Center
Tools for a Happier Life. A variety of resources, tips, quotes, etc.


The National Niemann-Pick Disease Foundation Inc. does not endorse, approve, or certify any of the organizations shown on this page. These links are provided for information purposes only.


See Also:
National Niemann-Pick Disease Foundation Contacts