What Our Surveys Say So Far About the Needs of the FND Community

As many of you are aware, Not Defined By FND is currently conducting a series of ongoing surveys with the aim of gaining insight into various aspects of FND. One key focus of these surveys is to identify the specific needs of the FND community.

To ensure a comprehensive understanding, the surveys have been distributed not only to individuals diagnosed with FND and their supporters, but also to professionals in the medical field (including mental health).

After compiling the results of the surveys completed thus far, we have identified the most frequently mentioned areas of need.

Essential needs and resources mentioned include:

• Raising awareness within both the general community and the medical field

• Ensuring that patients are heard, listened to, and acknowledged by medical professionals

• Implementing a change of name to accurately reflect the condition

• Establishing a coordinated care team to provide comprehensive support

• Providing FND-specific training for medical professionals

• Offering lifestyle support for individuals living with FND

• Providing support for caregivers

• Establishing support groups for individuals with FND

• Investing in research to further understand and treat FND

• Ensuring that medical professionals are knowledgeable about FND

• Improving access to effective treatments
  

While many of these needs and resources may seem obvious to those of us in the FND community, it is crucial to have concrete data to back up our claims and demonstrate the necessity of these resources. This is why we have developed surveys to gather this information, and why we will continue to conduct these surveys to track progress and identify new needs. This also ensures that our goals are always in line with the needs of the FND community.

Sharing this data with potential partners and collaborators will be essential for organizing future initiatives, such as awareness campaigns and research projects. Therefore, it is imperative that we all work together to share these surveys far and wide. By doing so, we can ensure that we have the data required to effectively address the needs of the FND community. Let's continue to collect and share this vital information to make a difference in the lives of those affected by FND!

Click here to learn more about our surveys!