Family Support & Medical Conference

In Conjunction with INPDA Biennial Meeting

If you are having trouble joining the virtual conference or have any questions please contact Lindsey Collier at
lindsey@sswmeetings.com or 518-915-3975

What to Expect from the 2021 Conference

Once a year the NNPDF community gathers together for a special time to meet and connect with friends who truly understand the struggles related to Niemann-Pick Disease. Even though our annual family conference will look a little different this year, we will continue to provide opportunities to reconnect and build stronger bonds with one another.

Our virtual conference will be interactive and engaging with the latest in clinical updates, educational sessions from top speakers, separate sessions for ASMD and NPC, and our highly requested family break-out sessions. Family Advisory Working Groups will take place prior to the conference.

What matters most is our families and the community that we have built. Although we will participate in this year’s conference from our own homes, we will still come together as one Niemann-Pick community and continue our tradition of supporting one another.

For The Future

We envision an enduring patient support community that embodies strength, hope and empathy for those affected by all Niemann-Pick Disease types. We believe deeply in the future of research that promotes clinical treatments with the potential to improve patient quality of life and with the intent to ultimately cure all Niemann-Pick Disease types.

We Are Committed To:

  • Supporting and empowering patients and families affected by NPD by meeting them where they are in their NPD journey.

  • Upholding a balanced approach with families, researchers, clinicians and industry to move treatment forward to provide a variety of therapies and to work together toward a cure. We encourage full transparency among all stakeholders in the Niemann-Pick Disease community.

  • Supporting basic science and clinical research through awareness and collaborative funding initiatives.

  • Adhering to a written code of conduct that fosters respect for all, regardless of treatment choices or research perspectives, which maintains patient privacy and follows the national HIPPA regulations.

  • Encouraging and promoting advocacy and collaborative community partnerships across the NPD community, both in the U.S. and internationally.

  • Respecting the diversity of Board members, employees, families, researchers, clinicians and industry, and governing the NNPDF ethically and transparently according to NNPDF Bylaws.