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Thursday, July 20, 2023  |  1:00 – 4:00 pm

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The National Niemann-Pick Disease Foundation, Inc. (NNPDF) will host Family Advisory Working Groups that will take place prior to the start of our Family Support & Medical Conference at the Wyndham Grand hotel in Orlando, FL. This is an optional event and 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 their 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.
 

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 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 the full Working Group session.

  • Respect the privacy of families and Industry, keep all information confidential, and not record or digitize any of the session.

  • 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.

  • Attend the NNPDF Family Support & Medical Conference.


Family Advisory Working Group participants are eligible for:​

  • Up to $350 stipend per participant.

  • 1 night hotel room per participant or per participating family, limited to the night prior to the session, room and tax only. (Hotel room will need to be booked by June 15th at the group rate)

  • Family Advisory Working Groups stipends will be paid following the event and are contingent on attendance in designated Working Group sessions and the NNPDF Family Support & Medical Conference.

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Application Deadline is May 31, 2023

Applicants will be notified by June 5, 2023 if accepted

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