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Upcoming Events

February 2021

Rare Disease Month Programming


FEBRUARY 18 – Thursday
Community Connections: Emergency Hardship Program
1:00 PM EST  Register here.
Join Family Services Manager, Laurie Turner as she discusses the Emergency Hardship Program and answers any questions you may have regarding eligibility.

FEBRUARY 18 – Thursday
Community Update Webinar Series: Overview of Ongoing Clinical Development Programs for Investigational Therapies in NPC and Q&A for Families
8:00pm ET/5:00pm PT   Register here.

FEBRUARY 19 – Friday
Community Connections: NPC Community
1:00 PM EST  Register here.

FEBRUARY 22 – Monday
Community Connections: Coffee & Catching Up
11:00 AM EST  Register here.

FEBRUARY 23 – Tuesday
Navigating Together: Legacy Families

(Pre-registration required, contact Laurie Turner, Family Services Manager at

FEBRUARY 24 – Wednesday
Community Connections: NPC Community
1:00 PM EST
 Register here.

FEBRUARY 25 – Thursday
Community Connections: ASMD Community
1:00 PM EST
 Register here.

Rare Disease Day

INPDA Newsletter


July 2021

July 29 – August 2, 2020
NNPDF – INPDA Global Family Support & Medical Conference

Thursday, July 29:
NNPDF Family Advisory Working Groups
NNPDF Conference Opening
NNPDF Welcome Event

Friday, July 30:
NNPDF Community Conference Sessions
INPDA Welcome Event

Saturday, July 31:
NNPDF & INPDA Global Community Conference Session

Sunday, August 1:
INPDA Conference Sessions

Monday, August 2:
INPDA Community Conference Sessions