NNPDF FAMILY SUPPORT & MEDICAL CONFERENCE
Thursday, July 9, 2026 | 1:00 – 4:00 pm ET
The National Niemann-Pick Disease Foundation (NNPDF) will host Family Advisory Working Groups prior to the start of our Family Support & Medical Conference at the Wyndham Grand Orlando Resort Bonnet Creek in Orlando, Florida. This is an optional event and pre-registration is required.
Family Advisory Working Groups foster communication between Niemann-Pick families and the pharmaceutical industry, helping provide insight into the patient and family experience. These sessions offer industry partners the opportunity to connect privately with a small group of patients and/or immediate family members.
Participants are eligible for up to a $350 stipend per person, as well as one night of hotel accommodations (July 8, room and tax only at the group rate) per participating family. Stipends will be distributed after the event and are contingent upon attendance. Due to limited space, participation may be limited to two individuals per family.
PLEASE NOTE: Family Advisory Working Groups availability is subject to change.
To qualify for participation, eligible applicants are required to:
- Submit your application by April 19
- Complete your conference registration and registration fees by May 17
- Book your hotel accommodations by June 8 at the discounted group rate
- Reside in the United States
Program Overview:
Family Advisory Working Groups will provide industry partners the opportunity to connect privately with a group of Niemann-Pick 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 Groups 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.
- Be able to discuss and obtain feedback but cannot promote specific treatments or investigational therapies or their associated services or processes.
- 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 or their associated services or processes or other information shared during the session to other nonparticipants outside of the session.
- 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 after the event and are contingent on attendance in designated Working Group sessions and the NNPDF Family Support & Medical Conference.
Application Deadline is April 19
If you have any questions please contact [email protected].