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Family Support & Medical Conference

NNPDF Family Support & Medical Conference

in Conjunction with INPDA Biennial Meeting
JOINT CONFERENCE DATES:  July 28 – August 1, 2022
NNPDF:  July 28 – 30  |  INPDA:  July 29 – August 1
Wyndham Grand Orlando Resort Bonnet Creek | Orlando, Florida

Family Advisory Working Groups

The National Niemann-Pick Disease Foundation, Inc. (NNPDF) will host Family Advisory Working Groups that will take place on Thursday, July 28, 2022 from 1:00 pm – 4:00 pm EST prior to the start of our Family Support & Medical Conference. 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. Due to limited space, there is a limit of 2 participants per family. Participants must be adults living in the United States.

Family Advisory Working Group participants are eligible for a 1-night hotel room per family on July 27th (room and tax only) and up to $350 stipend per participant. Application deadline is May 16th.

Family Conference Scholarships

Scholarship assistance is available to NNPDF registered US families attending the NNPDF Family Support and Medical Conference in Orlando, Florida from July 28 – 30, 2022.

Assistance is available to help NNPDF families living in the US, who are experiencing financial need to help offset the cost of attending the 2022 Family Support and Medical Conference. Family Conference Scholarships are limited to immediate family members of an individual with NPD. The NNPDF Family Conference Scholarship will provide up to three (3) nights hotel (room and tax only*) to eligible applicants. Application deadline is May 16th.

Joele Ruppert & Joseph Colton ASMD Scholarship

Joele Ruppert and Joseph Colton are a much-loved daughter and son, both diagnosed with ASMD. This scholarship has been created in honor of the lives of these two cherished children and their parents who embodied the highest values of the human spirit.

The Joele Ruppert and Joseph Colton ASMD Scholarship provides one-time scholarship funding of $500.00 to individuals diagnosed with ASMD for studies in post-secondary (high school) degrees, including two-year colleges, four-year colleges, vocational schools, and other post-secondary institutions. Application deadline is May 15th.

NNPDF Cora Sterling Endurance Award

Do you know a great young person who shines for Niemann-Pick awareness? NNPDF is seeking nominations for the NNPDF Cora Sterling Endurance Award. This award is presented annually at the NNPDF Family Support & Medical Conference to a young person (under age 25) who shines in raising awareness of Niemann‐Pick disease in the community. Nomination deadline is May 31st.


NNPDF Annual Family Conferences

Once a year the NNPDF community gathers together for a special time to meet in person and connect with friends who truly understand the struggles related to Niemann-Pick disease. Families have shared that the annual family conference is a unique opportunity that helps them to reconnect and build stronger bonds with one another in support, encouragement and enlightenment.

Top researchers attend to interact with families and share their expertise. They provide updates about the clinical trials underway and the opportunity to learn more about research occurring in the field. The Family Conference offers separate sessions for ASMD and NPC.

As one voice, we can achieve urgently needed approved clinical treatments and continue to support research toward a cure. Your commitment has helped the NNPDF to persevere as a community. Click the button below for information from past family conferences.

Supporting one another. Supporting our community.