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Index of Pages on NNPDF Web Site (www.nnpdf.org)

Tips to help you get the most out of the NNPDF Web site (PDF)

NOTE: Every page of our site has a "Picosearch" tool in the blue area along the left side.  Use the Picosearch tool to search only the NNPDF Web site (not the entire Internet) for whatever term you enter in the search box.

Page Title or Main Topic

URL

NNPDF Web Site Home page

http://www.nnpdf.org/index.html

 

 

Overview of Niemann-Pick Disease

http://www.nnpdf.org/npdisease_01.html

How Is It Diagnosed?

http://www.nnpdf.org/npdisease_02.html

Type A

http://www.nnpdf.org/npdisease_03.html

Type B

http://www.nnpdf.org/npdisease_04.html

Type C

http://www.nnpdf.org/npdisease_05.html

Treatment Options

http://www.nnpdf.org/npdisease_06.html

Type A

http://www.nnpdf.org/npdisease_07.html

Type B

http://www.nnpdf.org/npdisease_08.html

Type C

http://www.nnpdf.org/npdisease_09.html

 

 

Information for Health Care Providers and Educators

http://www.nnpdf.org/npdisease_10.html

Type A

http://www.nnpdf.org/npdisease_11.html

Type B

http://www.nnpdf.org/npdisease_12.html

Type C

http://www.nnpdf.org/npdisease_13.html

The Progression of NPD Type C
(Photos - Adam Ward and Stacey Vorpahl)

http://www.nnpdf.org/npdisease_19.html

Zavesca

http://www.nnpdf.org/npdisease_09.html

 

 

“FYI” Articles and Related Info

 

Access to Investigational Drugs (“Compassionate Use”)

http://www.nnpdf.org/CompassionateUse.html

Cataplexy

http://www.nnpdf.org/WhatIsCataplexy.htm    

Considering Experimental Therapies

http://www.nnpdf.org/ExperimentalTherapies.html

CoQ10

http://www.nnpdf.org/WhatIsCoQ10coenzymeQ10.htm

Curcumin

http://www.nnpdf.org/Curcumin.html

Cybercautions

http://www.nnpdf.org/CyberCautions.html

Cyclodextrin

http://www.nnpdf.org/Cyclodextrin.html

NIH Info

http://www.nnpdf.org/NIHTherapeuticsforRareandNeglectedDiseases.html
What is Pick's Disease? http://www.nnpdf.org/PicksDisease.htm

Seasonal Flu Information

http://www.nnpdf.org/seasonalfluinformation.html

Seizures

http://www.nnpdf.org/WhatIsASeizure.htm

Zavesca

http://www.nnpdf.org/npdisease_09.html

 

 

The Foundation

 

Foundation Mission and Goals

http://www.nnpdf.org/aboutus_01.html

Message from the Chair

http://www.nnpdf.org/aboutus_02.html

Message from the Past Chair

http://www.nnpdf.org/aboutus_21.html

Meet the NNPDF Board

http://www.nnpdf.org/aboutus_03.html

Meet the NNPDF Staff

http://www.nnpdf.org/aboutus_04.html

Meet the Scientific Advisory Board

http://www.nnpdf.org/aboutus_05.html

Foundation Financials and Forms

http://www.nnpdf.org/aboutus_11.html

Foundation History

http://www.nnpdf.org/aboutus_12.html

What We’ve Accomplished

http://www.nnpdf.org/aboutus_13.html

About Our Logo

http://www.nnpdf.org/aboutus_15.html

Privacy Policy

http://www.nnpdf.org/aboutus_16.html

Administration

http://www.nnpdf.org/admin.html

Contact Us

http://www.nnpdf.org/aboutus_17.html

 

 

Foundation News

 

NewsLine

http://www.nnpdf.org/aboutus_14.html

NewsLine Archive

http://www.nnpdf.org/NewslineArchive2008andOlder.html

Upcoming Fundraising/Awareness Events

http://www.nnpdf.org/donorinfo_13.html

Fundraising/Awareness Events - 2010 and 2009

http://www.nnpdf.org/donorinfo_19.html

Fundraising/Awareness Events - 2008 and Prior

http://www.nnpdf.org/RecentEvents2008andEarlier.html

Dr. Peter G. Pentchev

http://www.nnpdf.org/PeterGPentchevTribute.html

 

 

Foundation Publications

 

Brochures, Posters and Newsletters

http://www.nnpdf.org/familyservices_04.html

Videos and Posters

http://www.nnpdf.org/media_05.html

 

 

Media

 

Press Releases

http://www.nnpdf.org/media_03.html

Guide to Getting Media Coverage / NPD Families in the News - Articles, Links, etc.

http://www.nnpdf.org/media_04.html

Video and Print Resources

http://www.nnpdf.org/media_05.html

Media Archive

http://www.nnpdf.org/media_07.html

 

 

NNPDF Social Media

 

Blog

http://www.nnpdf.org/blog.html

Facebook Page

http://www.facebook.com/group.php?gid=29559569806

Listserv Groups

http://www.nnpdf.org/familyservices_05.html

 

 

October Awareness Month

 

2009 October Awareness Month

http://www.nnpdf.org/NPDOctoberAwarenessMonth.htm

2010 October Awareness Month

http://www.nnpdf.org/NPDOctoberAwarenessMonth2010.htm

10-10-10 Challenge (2010)

http://www.nnpdf.org/OctoberChallenge.html

Online Auction

http://www.nnpdf.org/OnlineAuction.html

 

 

Grant and Fellowship Applications

 

Research Funding Strategy

http://www.nnpdf.org/npresearch_01.html

Applying for a Grant

http://www.nnpdf.org/npresearch_02.html

Applying for a Fellowship

http://www.nnpdf.org/npresearch_15.html

Grant Calendar

http://www.nnpdf.org/npresearch_03.html

Current Grants

http://www.nnpdf.org/npresearch_04.html

Peter G. Pentchev Research Fellowship

http://www.nnpdf.org/PeterPentchevResearchFellowship.html

 

 

Research

 

The Latest Research

http://www.nnpdf.org/npdisease_14.html

Fellowships Funded by NNPDF

http://www.nnpdf.org/FellowshipsFunded.html

Grants Funded by NNPDF

http://www.nnpdf.org/npresearch_05.html

Clinical Research/Services Funded by NNPDF

http://www.nnpdf.org/ClinicalResearchFunded.html

Clinical Trials

http://www.nnpdf.org/npresearch_06.html

NPA/NPB Cell Line Bank

http://www.nnpdf.org/SchuchmanLab.html

Abstract of Article on Orphanet Journal of Rare Diseases re: NPC by Marie Vanier June 2010

http://www.nnpdf.org/AbstractVanierOct2009Niemann-PickdiseasetypeC.mht

NIH/Dr. Porter’s Clinical Trial

http://www.nnpdf.org/NPCClinicalTrialOpportunity.html

Enzyme Replacement Therapy Info (ASMD)

http://www.nnpdf.org/npresearch_11.html

Zavesca (miglustat) Info (NPC)

http://www.nnpdf.org/npresearch_12.html

NSAIDS in NPC (Fran Platt Abstract)

http://www.nnpdf.org/npresearch_13.html

UCSF and NNPDF Partnership

http://www.nnpdf.org/npresearch_14.html

Dr. Edward Schuchman's Lab at Mt. Sinai

http://www.nnpdf.org/SchuchmanLab.html

Corielle Institute for Medical Research

http://www.nnpdf.org/familyservicesCoriell.html

 

 

Foundation Store/Awareness Products

http://www.nnpdf.org/store.html

NPD Awareness Items

http://www.nnpdf.org/aboutus_19.html

NNPDF Bookstore

http://www.nnpdf.org/aboutus_18.html

Trucks Awareness Campaign

http://www.nnpdf.org/aboutus_20.html

GoodSearch.com

http://www.nnpdf.org/aboutus_22.html

 

 

Family Services                 

 

What Do We Do?

http://www.nnpdf.org/familyservices_01.html

Family Information and Referrals

http://www.nnpdf.org/familyservices_02.html

Resources and Links

http://www.nnpdf.org/npdisease_18.html

Brochures, Posters and Newsletters

http://www.nnpdf.org/familyservices_04.html

Videos and Posters

http://www.nnpdf.org/media_05.html

Fundraising Support

http://www.nnpdf.org/familyservices_17.html

Listserv Groups

http://www.nnpdf.org/familyservices_05.html

Listserv Guidelines

http://www.nnpdf.org/FamilyServicesListservGuidelinesJune09.html

Information for Families

http://www.nnpdf.org/familyservices_06.html

Caregiving Tips

http://www.nnpdf.org/familyservices_07.html

Coping with Niemann-Pick Disease

http://www.nnpdf.org/familyservices_08.html

Equipment Exchange

http://www.nnpdf.org/familyservices_09.html

Physician Services

http://www.nnpdf.org/familyservices_10.html

Genetic Counseling

http://www.nnpdf.org/familyservices_11.html

Hospice, Palliative and Respite Care

http://www.nnpdf.org/familyservices_12.html

Individual Educational Plan (IEP)

http://www.nnpdf.org/familyservices_13.html

Individual Educational Plan (IEP) Resources

http://www.nnpdf.org/familyservices_19.html

Legal and Insurance

http://www.nnpdf.org/familyservices_14.html

Links and Other Resources

http://www.nnpdf.org/familyservices_15.html

Family Web Sites; Celebration and Memorial Page

http://www.nnpdf.org/familyservices_16.html

Memorial List

http://www.nnpdf.org/familyservices_26.html

Memorial Poems

http://www.nnpdf.org/MemorialPoems2.htm

Caring Bridge Web Site Info

http://www.nnpdf.org/familyservices_44.html

Diagnostic and Genetic Testing

http://www.nnpdf.org/familyservices_20.html

Dealing with a Diagnosis of NPD

http://www.nnpdf.org/familyservices_21.html

Care for the Caregiver

http://www.nnpdf.org/familyservices_22.html

Sibling Reactions

http://www.nnpdf.org/familyservices_23.html

Grief Support Resources

http://www.nnpdf.org/familyservices_24.html

Teens in Transition

http://www.nnpdf.org/familyservices_25.html

Brain and Tissue Bank

http://www.nnpdf.org/familyservices_37.html

State-Specific Resources

http://www.nnpdf.org/familyservices_38.html

International NPD Organizations

http://www.nnpdf.org/InternationalLinksandInfo.html
International Niemann-Pick Disease Alliance (INPDA) http://www.nnpdf.org/InternationalLinksandInfo.html

Links to Other NPD Organizations

http://www.nnpdf.org/media_08.html and http://www.nnpdf.org/InternationalLinksandInfo.html

Lysosomal Storage Disease Organizations

http://www.nnpdf.org/media_13.html

World Rare Disease Day

http://www.nnpdf.org/WorldRareDiseaseDay.html

 

 

NNPDF Family Support and Medical Conferences

 

Family Support and Medical Conferences

http://www.nnpdf.org/familyservices_03.html

2007 Family Conference Travel Info

http://www.nnpdf.org/familyservices_42.html

2007 Family Conference Hotel Info

http://www.nnpdf.org/familyservices_43.html

2008 Family Conference

http://www.nnpdf.org/2008NNPDFFamilyConference.html

2009 Seattle Conference Video

http://www.nnpdf.org/NNPDFSeattle2009_0001.wmv

Family Conference Save the Date Card

http://www.nnpdf.org/FamConfSavetheDateCard.html

Helping Hands Stipend Info

http://www.nnpdf.org/familyservices_41.html

 

 

Families’ Stories

 

Family Web Sites and Memorials

http://www.nnpdf.org/familyservices_16.html

This, My Child (Breann Chavez)

http://www.youtube.com/watch?v=UW0pk77SSg4

The Progression of NPD Type C
(Photos - Adam Ward and Stacey Vorpahl)

http://www.nnpdf.org/npdisease_19.html

Stacey:  A True Hero (Stacey Vorpahl)

http://www.nnpdf.org/aboutus_09.html and http://www.nnpdf.org/documents/Staceyatrueheroarticle.pdf

One Child’s Story (Stacey Vorpahl)

http://www.nnpdf.org/OneChildsStory.html

Golf FORE Stacey Annual Fundraiser (Stacey Vorpahl)

http://www.nnpdf.org/GolfForeStacey.html

A Strike for Andy (Andy Wood)

http://www.nnpdf.org/AstrikeforAndy.mht

Parody Family Fundraiser (Collin and Cohen Parody)

http://www.nnpdf.org/DexterFamilyAffectedbyNiemann-PickDiseasetoHostFundraiser_000.mht

Taillefer Family page

http://www.nnpdf.org/MonicaTaillefer.html

A Parent’s Perspective of the Clinical Trial Process (Green Family)

http://www.nnpdf.org/documents/susangreenpresentation.pdf

Tee Times for Ty (Quandt) video

http://www.nnpdf.org/TeeTimesForeTy09.wmv

 

 

Photos, Slideshows, etc.

 

2008 Family Conference Memorial Presentation; Photo Album page 1

http://www.nnpdf.org/album_01.html

Photo Album page 2

http://www.nnpdf.org/album_02.html

Photo Album page 3

http://www.nnpdf.org/album_03.html

Photo Album page 4

http://www.nnpdf.org/album_04.html

Photo Album page 5

http://www.nnpdf.org/album_05.html

Photo Album page 6

http://www.nnpdf.org/album_06.html

Photo Album page 7

http://www.nnpdf.org/album_07.html

Photo Album page 8

http://www.nnpdf.org/album_08.html

Photo Album page 9

http://www.nnpdf.org/album_09.html

Photo Album page 10

http://www.nnpdf.org/album_10.html

Photo Album page 11

http://www.nnpdf.org/album_11.html

Photo Album page 12

http://www.nnpdf.org/album_12.html

Family Conference Pictures

http://www.nnpdf.org/FamilyConferencePictures.htm

 

 

Donors and Fundraising

 

How We Use Your Support

http://www.nnpdf.org/donorinfo_01.html

Donate Now; Thank You for Supporting NNPDF

http://www.nnpdf.org/donorinfo_06.html

Donating to NNPDF Online

http://www.nnpdf.org/donorinfo_07.html

Donating to NNPDF via Mail

http://www.nnpdf.org/donorinfo_08.html

Planned Giving Program

http://www.nnpdf.org/donorinfo_09.html

Contributing through United Way and Combined Federal Campaign

http://www.nnpdf.org/donorinfo_15.html

When It’s Time to Honor a Loved One

http://www.nnpdf.org/donorinfo_17.html

Holding a Fundraiser

http://www.nnpdf.org/donorinfo_11.html

Fundraising Support

http://www.nnpdf.org/familyservices_17.html

Donate Goods and Services

http://www.nnpdf.org/donorinfo_12.html

Upcoming Fundraising/Awareness Events

http://www.nnpdf.org/donorinfo_13.html

Fundraising/Awareness Events --
2010 and 2009

http://www.nnpdf.org/donorinfo_19.html

Fundraising/Awareness Events –
2008 and Earlier

http://www.nnpdf.org/RecentEvents2008andEarlier.html

Life for Luke Gala

http://www.nnpdf.org/donorinfo_16.html

Quandt Family Community Dance

http://www.nnpdf.org/donorinfo_18.html

 

 

 

[Feb 11, 2011 mem]