Hidradenitis Suppurativa (HS) Citizen Science Project

Are any of you interested in being a part of a HS Citizen Science project to help be part of the changes that we want to see?

There is HS A Team of us that have been working together to try and get this to happen behind the scenes. I am sure that many of you have seen the media kit that we are working together to create and we welcome any of you to join the HS A Team and be a HS Citizen Scientist. This is for all of us.

Have any of you heard of citizen science?

Check out this video by Dr Erinma Ochu explaining what Citizen Science is.

HS Citizen Science Project and Privacy?

We understand that there are those of you that do not want the public to know that you have HS and we have thought about and discussed this. We have daft senses of humor (helps with the HS) and tried to think of a way we could remove the issue of respecting your privacy and also enabling you to be part of the HS Citizen Science project.

Would having a HS superhero name of your choice help? Only select members of the team would know your real identity.

For those of you that like the idea of a HS superhero name and don’t mind the public knowing who you are can still have a HS superhero name and also have your real name displayed too.

We have created a private HS Citizen Science HS A Team group on hssupport.org where we can discuss our HS Citizen Science project and share ideas. Please feel free to join us there if you are interested and would like to ask questions or join in. Hope to see you there.

Please comment your thoughts and any ideas. Much love 💜 Michaela (kaykay).


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