Plain Language Summaries

Introduction

As the National Niemann-Pick Disease Foundation, our mission is to support and empower our community with the most current and understandable information. We know that medical research and clinical trial results can often be complex, filled with scientific terms that are difficult to navigate without a specialized background. That’s why we’re pleased to present a collection of plain language summaries.

Plain language summaries are simplified versions of detailed scientific and medical articles. Our aim in providing these summaries is to translate complex research findings into clear, easy-to-understand language, making vital information accessible to everyone in our community – including patients, caregivers, family members, and advocates.

These summaries can be helpful because they empower you with knowledge. By offering concise explanations of important research, clinical trial outcomes, and new treatment developments, they allow you to stay informed about the progress being made in the Niemann-Pick community. This understanding can be valuable for engaging in more informed discussions with your healthcare team, making decisions that are right for you and your family, and feeling more connected to the advancements in the field.

We’re also excited to share that we’ve recently updated the glossary of terms on our website to further assist you in understanding medical and reimbursement terms.

Additionally, for a quick overview of our approved therapies, you can now find high-level summary of each treatment conveniently located on the on this site.

We believe that everyone deserves to understand the science that impacts their lives. For those who wish to delve deeper into the original research, a direct link to the full article will be provided with each summary. We hope these resources serve as a valuable and supportive tool for you.

Respectfully,