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March 2020 News: Community Survey

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March 2020
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NNPDF Launches Important Community Survey

Survey will be the most comprehensive of the Niemann-Pick insurance landscape conducted in the US

The NNPDF has recently begun preparing to conduct a survey of the U.S, Niemann-Pick Disease community to further understand the patient and healthcare provider experience in Niemann-Pick as it relates to health insurance knowledge, coverage, as well as the burdens experienced by patients and their families pertaining to access of medications, services and devices.

This is one of several advocacy campaigns prioritized for the Niemann-Pick community over the next 2 years. The survey will identify health insurance usage, access, and barriers across the country. The survey will also allow us to better understand where the community may need more tools or assistance in understanding the complexities of health insurance. The data gathered from this national survey will provide a credible quantitative platform for NNPDF when speaking with legislators, key opinion leaders, and media about access to medications, pricing, economic impact, or legislative reform. This is the most comprehensive survey of the Niemann-Pick health insurance landscape to be conducted in the U.S.

We are excited to work with Engage Health, Inc., a health research firm on this project. The firm is led by Patti Engel who brings over 25 years of experience in orphan and specialty products to her work and has developed similar tools for other rare disease communities. Engage Health, Inc. has a long history of conducting market research and PRO research in the rare disease space. Ms. Engel was the keynote speaker at the NNPDF Family Support & Medical Conference in 2019 and spoke to challenges & realities for the Niemann-Pick community during the regulatory process and post-approvals.

The survey will open to the Niemann-Pick community for participation in late spring/early summer and will consist of an online survey followed by a phone interview. The data gathered in the survey will be published and shared publicly once complete.