Not Defined By FND Ongoing Surveys
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Not Defined By FND is conducting multiple ongoing surveys regarding FND. Each is geared towards a different audience and has specific goals. The insights from the data obtained will be critical in helping us understand the current state of care and resource, and improve the quality of care and resources available to the FND community in the future.
Your answers are completely anonymous. No personally identifying information is requested. Note: examples of and excerpts from open-ended responses that are confirmed to not contain potentially-identifiable information may be shared!
Should you have any questions or require any assistance, please do not hesitate to contact us.
Click on the box that matches your role (see icons in the key below) to learn more about the available surveys and to participate. Thank you for helping us support the FND community!
Survey Participant Key
FND Warriors: Individuals who have received a diagnosis of Functional Neurological Disorder (FND)
FND Warrior Supporters: Family, friends, partners, and other supporters of someone with FND
Everyone's Welcome: Anyone, regardless of background or connection to FND
Medical & Mental Health Professionals: Doctors, nurses, therapists, psychologists, psychiatrists, etc.
Educators & Students: Faculty, staff, and students at secondary or post-secondary institutions
Researchers & Patient Advocates: People engaged in FND research, education, or advocacy
For FND Warriors
If you are an FND warrior, please also see the Polls section (below the survey links).
​FND Diagnosis, Treatments, & Resources: The purpose of this survey is to gather data, specifically on the length of time it takes for individuals to receive a diagnosis for FND, the delivery of FND diagnoses, the availability and effectiveness of current treatments and resources, and to identify specific resources that are needed by the FND community.
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This survey is open to anyone who has been diagnosed with FND.
​Share Your Strength: Contribute to the FND Companion: We're collecting stories, advice, quotes, and laughs from people living with FND to create an uplifting FND Companion. The survey invites you to share encouraging words, real-life experiences, practical tips for daily living, and even the funny moments that help you keep smiling. Your input will help others feel seen, supported, and inspired.
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This survey is open to anyone who has been diagnosed with FND.
A Consensus on the Most Appropriate Name for FND Related Seizures: This survey aims to gather insights from a diverse range of individuals to help establish a consensus on the most appropriate name for seizures related to Functional Neurological Disorder (FND). Terminology plays a crucial role in shaping public perception and understanding of medical conditions, and your input is vital in ensuring that the chosen term accurately reflects the nature of FND seizures while fostering a compassionate and informed understanding of the condition.
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Open to people diagnosed with FND, supporters of people with FND, medical professionals (including mental health), researchers, educators, and patient advocates.
Instant Thoughts: Exploring Reactions to Everyday Terms: The goal of this study is to explore the people's initial thoughts and feelings when encountering specific words. By capturing instinctive reactions, the research aims to better understand how these terms are perceived and the emotions or associations they evoke.
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This survey is open to everyone.
Help us map FND Support Resources: We’re collecting helpful resources — including support groups, books, websites, and more — to create a publicly available directory that anyone can access or download. Whether you're someone with FND, a caregiver, a provider, or an ally, your contribution can make a real difference.
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This survey is open to everyone.
For FND Warrior Supporters
​​Thoughts of FND Warrior Supporters: This survey is to better understand the experiences of those who support someone living with Functional Neurological Disorder (FND). Whether you're a family member, friend, partner, or close companion, your input will help us advocate for better care, more effective treatments, and stronger support systems. We're interested in your perspective on treatment access, daily challenges caused by FND symptoms, and the overall impact of being a supporter.
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This survey is open to anyone who provide support to individuals diagnosed with FND.
A Consensus on the Most Appropriate Name for FND Related Seizures: This survey aims to gather insights from a diverse range of individuals to help establish a consensus on the most appropriate name for seizures related to Functional Neurological Disorder (FND). Terminology plays a crucial role in shaping public perception and understanding of medical conditions, and your input is vital in ensuring that the chosen term accurately reflects the nature of FND seizures while fostering a compassionate and informed understanding of the condition.
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Open to people diagnosed with FND, supporters of people with FND, medical professionals (including mental health), researchers, educators, and patient advocates.
Instant Thoughts: Exploring Reactions to Everyday Terms: The goal of this study is to explore the people's initial thoughts and feelings when encountering specific words. By capturing instinctive reactions, the research aims to better understand how these terms are perceived and the emotions or associations they evoke.
​
This survey is open to everyone.
Help us map FND Support Resources: We’re collecting helpful resources — including support groups, books, websites, and more — to create a publicly available directory that anyone can access or download. Whether you're someone with FND, a caregiver, a provider, or an ally, your contribution can make a real difference.
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This survey is open to everyone.
Medical & Mental Health Professionals
​FND Knowledge in the Medical Community (including mental health): a survey to collect data in order to assess the medical community’s knowledge of functional neurological disorder (FND).
This survey is open to individuals who work in the medical field (including mental health), including, but not limited to physicians, nurses, physical therapists, occupational therapists, speech therapists, psychiatrists, psychologists, etc.).
A Consensus on the Most Appropriate Name for FND Related Seizures: This survey aims to gather insights from a diverse range of individuals to help establish a consensus on the most appropriate name for seizures related to Functional Neurological Disorder (FND). Terminology plays a crucial role in shaping public perception and understanding of medical conditions, and your input is vital in ensuring that the chosen term accurately reflects the nature of FND seizures while fostering a compassionate and informed understanding of the condition.
​
Open to people diagnosed with FND, supporters of people with FND, medical professionals (including mental health), researchers, educators, and patient advocates.
Instant Thoughts: Exploring Reactions to Everyday Terms: The goal of this study is to explore the people's initial thoughts and feelings when encountering specific words. By capturing instinctive reactions, the research aims to better understand how these terms are perceived and the emotions or associations they evoke.
​
This survey is open to everyone.
Help us map FND Support Resources: We’re collecting helpful resources — including support groups, books, websites, and more — to create a publicly available directory that anyone can access or download. Whether you're someone with FND, a caregiver, a provider, or an ally, your contribution can make a real difference.
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This survey is open to everyone.
Educators and Students in Higher Education
Current Status of the Understanding and Availability of Functional Neurological Disorder (FND) Information and Courses Within Secondary Education Institutions: The primary goal of this survey is to assess the current level of awareness, understanding, and availability of information and educational resources on Functional Neurological Disorders (FND) among graduate and doctoral students, faculty members, and administrative staff at secondary education institutions (universities, colleges, etc.).
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This survey is open to graduate and doctoral students, faculty members, and administrative staff at secondary education institutions (universities, colleges, etc.).
A Consensus on the Most Appropriate Name for FND Related Seizures: This survey aims to gather insights from a diverse range of individuals to help establish a consensus on the most appropriate name for seizures related to Functional Neurological Disorder (FND). Terminology plays a crucial role in shaping public perception and understanding of medical conditions, and your input is vital in ensuring that the chosen term accurately reflects the nature of FND seizures while fostering a compassionate and informed understanding of the condition.
​
Open to people diagnosed with FND, supporters of people with FND, medical professionals (including mental health), researchers, educators, and patient advocates.
Instant Thoughts: Exploring Reactions to Everyday Terms: The goal of this study is to explore the people's initial thoughts and feelings when encountering specific words. By capturing instinctive reactions, the research aims to better understand how these terms are perceived and the emotions or associations they evoke.
​
This survey is open to everyone.
Help us map FND Support Resources: We’re collecting helpful resources — including support groups, books, websites, and more — to create a publicly available directory that anyone can access or download. Whether you're someone with FND, a caregiver, a provider, or an ally, your contribution can make a real difference.
​
This survey is open to everyone.
Researchers & Patient Advocates
A Consensus on the Most Appropriate Name for FND Related Seizures: This survey aims to gather insights from a diverse range of individuals to help establish a consensus on the most appropriate name for seizures related to Functional Neurological Disorder (FND). Terminology plays a crucial role in shaping public perception and understanding of medical conditions, and your input is vital in ensuring that the chosen term accurately reflects the nature of FND seizures while fostering a compassionate and informed understanding of the condition.
​
Open to people diagnosed with FND, supporters of people with FND, medical professionals (including mental health), researchers, educators, and patient advocates.
Instant Thoughts: Exploring Reactions to Everyday Terms: The goal of this study is to explore the people's initial thoughts and feelings when encountering specific words. By capturing instinctive reactions, the research aims to better understand how these terms are perceived and the emotions or associations they evoke.
​
This survey is open to everyone.
Help us map FND Support Resources: We’re collecting helpful resources — including support groups, books, websites, and more — to create a publicly available directory that anyone can access or download. Whether you're someone with FND, a caregiver, a provider, or an ally, your contribution can make a real difference.
​
This survey is open to everyone.
Everyone Welcome
​Public Knowledge of FND - The purpose of this survey to assess the general public's familiarity with functional neurological disorder (FND).
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This survey is open to everyone.
Instant Thoughts: Exploring Reactions to Everyday Terms: The goal of this study is to explore the people's initial thoughts and feelings when encountering specific words. By capturing instinctive reactions, the research aims to better understand how these terms are perceived and the emotions or associations they evoke.
​
This survey is open to everyone.
Help us map FND Support Resources: We’re collecting helpful resources — including support groups, books, websites, and more — to create a publicly available directory that anyone can access or download. Whether you're someone with FND, a caregiver, a provider, or an ally, your contribution can make a real difference.
​
This survey is open to everyone.
Not Defined By FND Polls
These polls are designed for individuals who have been diagnosed with FND in order to gather information on specific aspects of the condition and coexisting conditions.
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Your answers are completely anonymous. No personally identifying information is requested. Note: examples of and excerpts from open-ended responses that are confirmed to not contain potentially-identifiable information may be shared!