Skip to content

Upcoming Webinars

June 2021

Community Update webinar series: Cyclo Therapeutics – Phase 3 Trial
Tuesday, June 29th at 7:30pm EST
Register here

Past Webinars

Community Update Webinar Series: ASMD Clinical Update (Recording) 
November 18, 2020

Community Update Webinar Series featuring Mallinckrodt (Recording)
April 27, 2020

Taking Care of You: Self-Care in Challenging Times (Recording)
April 1, 2020
Self-Aware Self-Care Follow Up Worksheet 

shoshannahecht.com

Community Update Webinar Series featuring Orphazyme (Recording)
February 23, 2020

Community Webinar: Niemann-Pick Newborn Screening Initiative (Recording)
July 10, 2019

Industry Updates Webinar Series: Featuring IntraBio, Inc. (Recording)
April 24, 2019

Industry Updates Webinar Series: Featuring Sanofi Genzyme (Recording)
April 3, 2019

Industry Updates Webinar Series: Featuring CTD Holdings, Inc. (Recording)
March 13, 2019

Industry Updates Webinar Series: Featuring Orphazyme (Recording)
March 6, 2019

Family Service Connections Webinar: PALS – Patient Airlift Services Webinar (Recording)
February 15, 2019

Family Service Connections Chat: Sharing Your Diagnostic Journey
January 30, 2019

Family Service Connections Chat: Who Is On Your Medical Team? Who’s the Captain?
January 16, 2019

International Niemann-Pick disease Registry (INPDR) U.S. Launch (Recording)
October 10, 2018


Clinical Trial Informational Patient Webinar: VTS-270 (Cyclodextrin)
May 31, 2016

VTS-270 (Cyclodextrin) Clinical Trial Informational Patient Webinar was held on Tuesday, May 31st, 2016.
For questions about the webinar contact the NNPDF Central Office at [email protected]

Click Below for Recordings

Additional Webinar Information

Supporting one another. Supporting our community.