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NNPDF Family Advisory Working Groups Overview

The National Niemann-Pick Disease Foundation, Inc. (NNPDF) will host Family Advisory Working Groups that will take place on Thursday, July 29, 2021 from 1:00 pm – 4:00 pm EST as a virtual event. This is an optional event that will take place prior to the start of our Family Support & Medical Conference by password-protected Zoom break-out rooms.  Pre-registration is required.

Family Advisory Working Groups will provide Industry partners the opportunity to connect privately with a group of 6-10 Niemann-Pick Type C or ASMD patients and/or immediate family members for a 3  hour session. 

Understanding patient and caregiver perspectives is extremely important. Patients and their families are often the most knowledgeable members of the care team and can offer unique perspectives. Family Advisory Working Groups foster communication between Niemann-Pick families and the pharmaceutical industry to provide guidance on the patient and family experience.

Working Group participants will be de-identified by NNPDF and randomly assigned to Family Advisory Working Group virtual break-out rooms by NNPDF in advance of the event. Neither Industry nor the participants will have influence over this process and neither will have access to the participant list prior to the event.

To apply to participate in the Family Advisory Working Groups, please complete the form below or contact Laurie Turner at familyservices@nnpdf.org with any questions. Due to limited space, there is a limit of 2 participants per family.  Participants must be adults living in the United States.


Industry partners will:
• Plan and lead a 3 hour private Family Advisory Working Groups session.
• Respect the privacy of families and keep all information confidential.
• Not discuss their specific treatments or investigational therapies.
• Not ask Family Advisory Working Groups participants to advise on an ongoing basis. Family Advisory. Working Groups are limited to the assigned time on July 29, 2021 only.


Family Advisory Working Group participants will:
• Commit to attend one (1) Family Advisory Working Groups session, as assigned by NNPDF. Participants cannot switch groups once assigned.
• Commit to sign in to the event by 1:00 pm EST.
• Respect the privacy of families and Industry and keep all information confidential.
• Not be asked to discuss specific treatments or investigational therapies.
• Not be asked to advise on an ongoing basis. NNPDF Family Advisory Working Groups are limited to the assigned times on July 29, 2021 only.


Family Advisory Working Group participants are eligible for:
• Up to $350 stipend to per participant.
• Family Advisory Working Groups stipends will be paid following the event and are contingent on attendance in designated sessions.
 


Working Group Application Deadline is July 1, 2021