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Video Resources

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2019

NORD – Niemann-Pick Types A & BOctober 2019
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NORD – Niemann-Pick Type COctober 2019
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Community Webinar: Niemann-Pick Newborn Screening Initiative
– July 10, 2019
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Industry Updates Webinar Series: Featuring IntraBio, Inc.
– April 24, 2019
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Industry Updates Webinar Series: Featuring Sanofi Genzyme
– April 3, 2019.
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PFDD Patient-Focused Drug Development Meeting – March 18, 2019
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Industry Updates Webinar Series: Featuring CTD Holdings, Inc.
– March 13, 2019
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JJ’s Story: Living with ASMD – February 21, 2019
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Industry Updates Webinar Series: Featuring Orphazyme – March 6, 2019
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Family Service Connections Webinar: PALS – Patient Airlift Services WebinarFebruary 15, 2019


2018

The International Niemann-Pick Disease Registry (INPDR) U.S. Launch Webinar – October 10, 2018
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Dr. Marc Patterson’s U.S. Senate Hearing Testimony   Rare Diseases: Expediting Treatments for Patients – October 3, 2018
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Justin’s Family Journey with ASMD   Dr. Justin Hopkin, NNPDF Board Chair shares his family journey with ASMD – September 22, 2018
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Understanding Genetics in Niemann-Pick Disease   Jackie Imrie, NPUK Trustee gives a breakdown of how genetics, or rather faulty genes play a part in NPD – September 5, 2018
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2017

The Making of Protein Therapies in ASMD   Published by Sanofi Genzyme – December 2017

Patient Caregiver’s Journey in ASMD   Re-Published by Sanofi Genzyme – December 2017

Sandra’s Journey in ASMD   Re-Published by Sanofi Genzyme – December 2017

Introduction to the INPDA   Published by NPUK – October 2017

Jack’s ASMD Story: Living with Niemann-Pick B   Published by Sanofi Genzyme – September 2017

Dreaming of a Cure
  Published by NPUK – May 2017

What is Niemann-Pick Disease Type C?   Published by NPUK – April 2017

What is ASMD Niemann-Pick Disease?   Published by NPUK – March 2017

Research into Niemann-Pick Disease Type C   Published by NPUK – February 2017


Forgotten Youth   Published by INPDA – February 2017
….Forgotten Youth Introductions in:
….English    Chinese    French    German    Italian    Spanish


2016

Rare Disease Research at NICHD: Niemann-Pick Disease Type C   Published by NIH – February 2016


2015

Imagine   Published by NPUK – June 2015


2014

Think Again.  Think NPC. Video   Published September 2014


2011

Living with NPC:  The Poincilit Family   Published April 2011
Here for You Always
Photo Montage Video
 
  Published March 2011


2010

Faces of NPC  Published January 2010 – Kaitlyn Maher sings You Were Meant to Be dedicated to kids with Niemann-Pick Disease


2009

CBS Evening News Segment on Dillon Papier and NPC  Published Spring 2009


2008

And This, My Child  (Breann Chavez, NPC, 2/10/03 – 6/8/06)   Published 2008


2002

Learning About Niemann-Pick Disease   Published 2002
Ryan’s Story   Published 2002


01/03/2018 jjb