Patient board
The Patient board makes sure we keep adding value for people with long Covid. It is currently starting up (May/June 2024).
The patient board helps with:
Giving feedback on the Toolkit. Things like: What treatments should we research first? What diagnostic tools are most useful to add? What features would you like to see? Are the texts easy to understand? Do you find the Toolkit easy to use?
Making sure groups and organizations in the community are represented. For example by helping out with recruiting people with long Covid in user tests, representing the Toolkit in national patient organizations, etc.
We strive towards a diverse Patient board (gender, geography, disease characteristics, etc.) of about 20 people that is representative of all people with long Covid.
Join the patient board
Would you like to be part of the Patient board, to help improve the Toolkit for people like you? Great! Contact us if you think you would be a good addition to the team.
It takes about one to two hours per month to be on the Patient board. These are volunteer positions.
This is the profile we are looking for:
You have or have recovered from long Covid. Or your child has long Covid.
You have a strong online presence and you like to network. You are an active member in other long Covid related networks, such as national or international patient organizations.
You have done some research into long Covid and you believe scientific research is important in finding treatments for long Covid.
You are open and respectful to different perspectives.
You have a positive and constructive attitude (focused on solutions not on problems).
You are willing to help with representing the Long Covid Toolkit in existing communities such as patient organizations.
We’d love to hear from you!
If you don’t exactly fit the profile, but feel you would be a good addition to the current board anyway, please feel free to reach out.
Patient board members
Ariel Conn. (profile text follows)