However you found your way here — a new diagnosis, a question you couldn’t answer, a conversation you needed help having — the National Niemann-Pick Disease Foundation made this with you in mind.
We built this toolkit because families who have walked this road before you, asked for it. They told us what they wished they’d had in the days after diagnosis, before the first school meeting, during the first insurance battle, and when someone who was supposed to help didn’t know what Niemann-Pick disease was.
What you’ll find here comes directly from their experiences, combined with guidance from specialists and others who understand this ultra-rare disease well.
The path will look different for every person, but know that whatever moment brings you here, you’re not navigating this journey alone.
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Type A or B (ASMD): Start Your Journey Here
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Type C (NPC): Start Your Journey Here
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The role of this NNPDF Family Toolkit is to support you in this journey by giving you clear information, practical tools, and language that helps conversations move forward. It is not meant to be read from start to finish. It’s designed to meet you in real moments — whether you were diagnosed last week or have been navigating this journey for years.
Each section is organized around a real moment in the journey: building a care team, navigating school, dealing with an insurance denial, planning for life transitions, feeling grief. Within each section, you’ll find context to help orient you, practical tools you can adapt — scripts, checklists, templates — and guidance on where to go next. Callouts throughout will flag information specific to ASMD or NPC, and to different ages and stages, so you can focus on what applies to your loved ones.
There is no single way or right way to navigate this toolkit, or journey. Take what you need — what’s relevant right now. Skip what’s not. Come back when the next step appears or question arises. Remember that behind every section of this toolkit is a community of families who have walked this road before and will continue walking it alongside you.
A note that this toolkit is not a substitute for medical or legal advice, and it’s not a script for every situation. It’s a starting point — one you can make your own.
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