Peer support

Find people who understand HS

Living with HS can be difficult to explain to someone who has never experienced it. If you want contact with other people living with HS, this page helps you compare established support groups and communities before deciding whether to join. AcneInversa.life does not run or moderate the groups listed here.

Compare support options Prefer to read without joining? Explore patient stories

Compare peer-support options

If you want to talk to other people who live with HS, these are current options. You can look before deciding whether you want to take part. Peer support is optional and is not right for everyone.

This site did not find reliable HS-specific outcome data showing that peer support changes disease course, so it makes no such claim. The value listed here is access to people with lived experience.

mullewupp – Akne inversa Selbsthilfe e. V.

Best for
German-language, HS-specific self-help from a registered association, with online exchange through a Facebook group and Instagram.
Language
German
Format
Patient organisation, Online community
Who it is for
People with HS
Who runs it
mullewupp – Akne inversa Selbsthilfe e. V., a registered association in Kiel (register of associations VR 6709 KI, since 20 February 2018, per directory listings).
Account required
Taking part through Facebook or Instagram requires an account on that platform. Whether membership of the association is needed was not verified.
Can I just read or listen?
Not verified. Check whether the Facebook group is open or closed.
Moderation
Not verified at last review.
Funding and commercial relationships
No public funding information located at last review.
Privacy note
Online exchange happens on Facebook and Instagram, which have their own privacy rules and may show your profile name to other members. Check who can see your profile and posts before joining.
Visit mullewupp — external website

Akne Inversa Club

Best for
German-language, HS-specific exchange with other affected people and relatives. A small forum (a few hundred members at last review).
Language
German
Format
Online community
Who it is for
People with HS, Supporters and relatives
Who runs it
Described in its imprint as a private portal run by and for people with acne inversa and their relatives. The forum runs on the Xobor hosted-forum platform.
Account required
The site describes registration as free. Whether guests can read without an account was not verified.
Can I just read or listen?
Not verified. Check what is visible before you register.
Moderation
The forum publishes community rules. How they are enforced was not reviewed.
Funding and commercial relationships
No funding information from the club itself located at last review. The cookie notice mentions advertising, presumably served by the forum platform (not verified).
Privacy note
External website. Its cookie notice says cookies are used to personalise content and ads, provide social-media features and analyse traffic. Check its registration and privacy terms before posting personal health information.
Visit Akne Inversa Club — external website

NIK e.V. (Netzwerk Autoimmunerkrankter)

Best for
German-language orientation across autoimmune and chronic inflammatory conditions. Not an HS-only group.
Language
German
Format
Patient organisation
Who it is for
People with HS, Supporters and relatives
Who runs it
NIK e.V. – Netzwerk Autoimmunerkrankter, a patient initiative. It describes its role as guiding patients to specialists rather than being a self-help association.
Account required
Public information needs no account. Requirements for individual events vary.
Can I just read or listen?
Public resources can be read without taking part.
Moderation
Not verified at last review.
Funding and commercial relationships
Industry funding is likely: a pharmaceutical company publishes transparency documents about NIK e.V. on its German website, and NIK has run events with the commercial telemedicine provider derma2go. Read the association's own disclosures. Its Acne inversa content (for example patient webinars) was reported to us but not checked by us at last review.
Privacy note
External website with its own privacy rules. Check its registration and privacy terms before posting personal health information.
Visit NIK e.V. — external website

HS Connect

Best for
English-language virtual support groups, including spaces for men, teens, parents and LGBTQ+ people. The group list changes: check the page.
Language
English
Format
Virtual meeting
Who it is for
People with HS, Supporters and relatives, Teens, Parents, Specific groups (see listing)
Who runs it
HS Connect, a patient organisation.
Account required
Registration requirements depend on the group and were not verified.
Can I just read or listen?
The organisation states that the groups are not formal therapy, that nobody has to share before they are ready, and that some people come to listen.
Moderation
Not verified at last review.
Funding and commercial relationships
No public funding information located at last review.
Privacy note
External website with its own privacy rules. Check its registration and privacy terms before posting personal health information.
Explore HS Connect support groups — external website

Hidradenitis Suppurativa Foundation – support groups

Best for
Finding established English-language patient organisations. The list is US-focused.
Language
English
Format
Patient organisation
Who it is for
People with HS, Supporters and relatives
Who runs it
Hidradenitis Suppurativa Foundation. It links onward to other organisations rather than running every group itself.
Account required
The directory page itself needs no account. Requirements of the linked groups vary.
Can I just read or listen?
The page can be read without taking part.
Moderation
Not verified at last review.
Funding and commercial relationships
No public funding information located at last review.
Privacy note
External website with its own privacy rules. Check its registration and privacy terms before posting personal health information.
Explore HS Foundation support resources — external website

myHSteam

Best for
An ongoing, social-network-style community in English. Unlike a scheduled support group, it is a feed of member posts.
Language
English
Format
Online community
Who it is for
People with HS, Supporters and relatives
Who runs it
MyHealthTeam. The service is described as a partnership between MyHealthTeam and UCB, a pharmaceutical company.
Account required
Described as free. Sign-up requirements for posting were not verified.
Can I just read or listen?
Not verified.
Moderation
Not verified at last review.
Funding and commercial relationships
Commercial operator with a pharmaceutical partner (UCB). Read its own sponsorship statements before sharing health information.
Privacy note
External website with its own privacy rules. Check its registration and privacy terms before posting personal health information.
Visit myHSteam — external website

How we review listings

We compare each description with what the organisation publishes about itself and record the date. Where we could not confirm something, the listing says so instead of guessing.

Listings are re-reviewed by hand every 90 days. After 120 days a listing is marked “Verification overdue”; it is not silently removed.

A listing does not mean AcneInversa.life endorses medical claims or advice shared inside the community. We show no trust scores or ratings, because we cannot audit what happens inside each group.

Funding is shown, not judged. Some communities have pharmaceutical or manufacturer partners; that is stated on the card where we found it.

This page carries no advertising or affiliate links, and nobody pays to be listed.

Know another HS support group?

You can suggest a patient organisation, support group or peer community for review through our contact page. Please include the group name, public web address, country, language and format. You do not need to tell us anything about your own health. Suggesting a group does not guarantee listing.

Suggest a support group

The moderation policy applies to this site’s own stories and questions, not to the external groups listed above.