We are Metabolic Support, the umbrella organisation for people affected by inherited metabolic disorders (IMDs). We have invited you to take part in our survey because you or someone close to you is affected by an IMD. This includes:
- Adults living with an IMD
- Those helping someone with an IMD to complete this survey
- Parents or carers of someone living with an IMD
- Bereaved parents or carers of someone who lived with an IMD
Open to the UK and international community, some terminology may be UK specific, if you have any questions, please contact us
Please keep to one response per individual. If more than one person in your household has an IMD, please complete a separate survey for each person, using a separate device for each response. We're sorry for the inconvenience, this helps us filter out bot responses.
Please keep to one response per individual. If more than one person in your household has an IMD, please complete a separate survey for each person, using a separate device for each response. We're sorry for the inconvenience, this helps us filter out bot responses.
If you're not able to complete the survey in one sitting, don't worry, your progress is saved automatically. Just use the same link to return and pick up where you left off.
If you do not feel comfortable in answering some of the sections, please feel free to skip them, however, the more you are able to answer will give us a better understanding of our community.
Your voice matters. We are conducting this survey to gather real-life insights about what it means to live with or care for someone with an IMD and what matters most to you. Your responses will help ensure that the needs and experiences of people affected by IMDs are reflected in what we do. What we learn from this survey will help shape our work over the next two years.
We also want you to know: we are here to support you. We understand this survey may bring up difficult feelings. Please reach out to us at any time at contact@metabolicsupport.org or on 0800 652 3181.
Privacy and confidentiality
Your answers will be treated confidentially. No personal or identifiable information will be shared outside of Metabolic Support, and you are free to skip any question you do not wish to answer.
We may share anonymised quotes with stakeholders, but your name and contact details will never be included. If you choose to provide your contact details at the end of the survey, they will only be used to follow up with you about this project, unless you give permission to receive further updates.
You can read our full privacy policy here: https://metabolicsupportuk.org/information-and-advice/our-policies/privacy-policy/
This survey will take approximately one hour to complete and closes at midnight on Tuesday the 15th September of 2026.
Thank you for your time.
Laura & Elise, Metabolic Support
If you do not feel comfortable in answering some of the sections, please feel free to skip them, however, the more you are able to answer will give us a better understanding of our community.
Your voice matters. We are conducting this survey to gather real-life insights about what it means to live with or care for someone with an IMD and what matters most to you. Your responses will help ensure that the needs and experiences of people affected by IMDs are reflected in what we do. What we learn from this survey will help shape our work over the next two years.
We also want you to know: we are here to support you. We understand this survey may bring up difficult feelings. Please reach out to us at any time at contact@metabolicsupport.org or on 0800 652 3181.
Privacy and confidentiality
Your answers will be treated confidentially. No personal or identifiable information will be shared outside of Metabolic Support, and you are free to skip any question you do not wish to answer.
We may share anonymised quotes with stakeholders, but your name and contact details will never be included. If you choose to provide your contact details at the end of the survey, they will only be used to follow up with you about this project, unless you give permission to receive further updates.
You can read our full privacy policy here: https://metabolicsupportuk.org/information-and-advice/our-policies/privacy-policy/
This survey will take approximately one hour to complete and closes at midnight on Tuesday the 15th September of 2026.
Thank you for your time.
Laura & Elise, Metabolic Support