top of page
family advisory working groups.png
2022 Graphics_5 copy 9.png

Thursday, July 11, 2024  |  1:00 – 4:00 pm MT

​

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 Marriott City Center in Salt Lake City, UT. This is an optional event and pre-registration is required.

​

Participants are eligible for up to a $350 stipend per participant and 1 night hotel (July 10th, room and tax only) per participating family. Stipends will be paid following the event and are contingent on attendance. Due to limited space, there may be a limit of 2 participants per family.

​

To qualify for participation, eligible applicants are required to:

  • submit your application by April 15th, 2024.

  • complete conference registration before April 30th during the early bird registration period.

  • book your hotel accommodations by June 24th at the group rate.

  • reside in the United States.

​

Application Deadline is April 15, 2024

Family Advisory Working Groups Overview:


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


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 attend 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.

  • 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.

​

Application deadline was April 15th and applications are now closed.

Applicants will be notified no later than May 1st if accepted.

​

If you have any questions please contact Laurie Turner at lturner@nnpdf.org

​

bottom of page