• Pompe Infusion Delay & Interruption Survey

  • We want to hear from the Pompe community.

    Recent reports of supply constraints affecting Pompe enzyme replacement therapies have raised concerns about delayed or interrupted infusions for some patients and families.

    This survey is designed to better understand the experiences of individuals living with Pompe disease and their caregivers, including whether an upcoming Nexviazyme/Nexviadyme infusion has been delayed or interrupted, how patients and families were informed, how long any delay lasted, and what impact the situation has had on care and daily life.

    Your responses will help patient advocates and the broader Pompe community better understand the scope and impact of these supply challenges, identify gaps in communication and support, and advocate for greater transparency and continuity of care.

    The survey should take approximately 5–7 minutes to complete.

  • Which best describes your role?*
  • What country do you currently live in?*
  • What type of Pompe disease have you been diagnosed with?*
  • How do you identify?*
  • What is your racial ethnicity? Select ALL that apply*
  • What is the age of the person living with Pompe disease?*
  • What is the biological sex of the person living with Pompe disease?*
  • What is the racial ethnicity of the person living with Pompe disease? Select ALL that apply*
  • What type of Pompe disease has your loved one been diagnosed with?*
  • What is your relationship to the person living with Pompe disease?*
  • Which Pompe disease treatment are you currently receiving or is your loved one currently receiving?*
  • How frequently is the current Pompe treatment administered?*
  • Approximately how long have you or your loved one been receiving this treatment?*
  • Have you or your loved one experienced a delay, cancellation, or interruption of a scheduled Nexviazyme/Nexviadyme infusion since July 2026?*
  • What happened with the scheduled infusion? Select ALL that apply*
  • Who first informed you about the potential delay or interruption?*
  • Has your delayed infusion now been rescheduled?*
  • Has the delay or the potential delay caused you to feel concerned about your or your loved one's health or disease progression?*
  • Have you experienced any new or worsening symptoms since your infusion was delayed?*
  • Overall, how satisfied are you with the communication you have received about this infusion supply situation?*
  • Which information would have been most helpful to you? Select ALL that apply.*
  • Were you offered any additional support because of the delay or the potential delay?*
  • If yes, what type of support were you offered? Select all that apply.*
  • Has this (current/potential) treatment disruption affected your emotional or mental well-being?*
  • What type of mental health support would be most helpful to you at this time?*
  • Would you like information about available mental health or peer-support or caregiver-support resources?*
  • Would you be willing to participate in a follow-up survey or interview about your experience?*
  • Format: (000) 000-0000.
  • Would you be willing to be contacted in the future to see if you may qualify for any market research opportunities?*
  • Format: (000) 000-0000.
  • Should be Empty: