Video Resources
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2021
Community Update Webinar Series featuring Cyclo Therapeutics – October 14, 2021
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Overview of Ongoing Clinical Development Programs for Investigational Therapies in NPC and Q&A for Families – February 18, 2021
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2020
Community Update Webinar Series: ASMD Clinical Update – November 18, 2020
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NPC Disease Awareness – Orphazyme – October 7, 2020
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Community Update Webinar Series Featuring Mallinckrodt – April 27, 2020
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Taking Care of You: Self Care in Challenging Times
– April 1, 2020
Self-Aware Self-Care Follow Up Worksheet
shoshannahecht.com
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Community Update Webinar Series featuring Orphazyme
– February 23, 2020
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2019
NORD – Niemann-Pick Types A & B – October 2019
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NORD – Niemann-Pick Type C – October 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 Webinar – February 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