Health Insurance Literacy and Challenges in Accessing Health Services in Niemann-Pick

Inclusion Criteria: * Participant must be a person with Niemann-Pick disease who is 18 years or older or The parent/legal guardian of a person with Niemann-Pick disease. Please note: Parents whose child has passed on are able to participate in the RSVP. Parents whose child has passed on in the last two years are also able to participate in the interview. Please note that only one family member will be eligible to complete the RSVP and interview for one family. * Confirmed diagnosis of Niemann-Pick disease, confirmed by membership in the NNPDF or by provision of a proof of disease form * Able to read, write and communicate in English * Able to grant informed consent * Willing to complete a survey and RSVP, and to participate in a 30-minute telephone interview * Ability to view or receive a document from the interviewer before or during the interview (web browser, ability to receive a text, fax or document by mail) Exclusion Criteria: \- Inability to meet any of the above 6 criteria