Gibt es eine Selbsthilfegruppe für idiopathische subglottische Stenosen?

Ja, die Selbsthilfe Trachealstenose ist eine Community von betroffenen Personen. Sie trifft sich monatlich virtuell und einmal im Jahr auch persönlich.

Ist die idiopathische subglottische Stenose eine häufige Krankheit?

Nein, überhaupt nicht. Die Krankheit ist auch vielen Ärzten unbekannt. Darum besuchen wir Ärztekongresse und Messen um das Krankheitsbild bekannter zu machen.

Making a difference together

It all started with two women with tracheal stenosis. Their doctor brought them together and motivated them to form a support group for patients with idiopathic subglottic stenosis.

No sooner said than done. In 2022, a website was launched and a flyer designed. Within just twelve months, the group has grown to over 50 members from Switzerland, Germany and Austria. In 2023, they jointly founded the Self-Help Tracheal Stenosis Association based in Weinfelden (Switzerland).

We usually meet once a month for a video call and have a face-to-face meeting once a year. Occasionally we can get a doctor to come along for a meeting. In between, we attend medical conferences and similar events to raise awareness of our illness. Check out our calendar.

Are you also affected?

If you trust us, just write an email to trachealstenose@gmail.com , even better, register as a new member (click Login and then Register) . We will contact you immediately.

The association is supported by the Thurgau Self-Help Center in Weinfelden. If you would like to know more about us, please feel free to contact the Self-Help Center first.

Andrea E., Gerti M., Katja F., Yvonne S. and Meike K.

at the founding ceremony of the German club.

Not in the picture: Anna G.

An important goal of our group is to exchange ideas, support each other and provide information to make life easier. Another goal is to raise awareness of our rare disease, because unfortunately tracheal stenosis is still far too often not recognized for a long time, so that those affected often go through a long period of suffering before they receive help.

We usually meet once a month for a video call and have a face-to-face meeting once a year. Occasionally we can get a doctor to come along for a meeting. In between, we attend medical conferences and similar events to raise awareness of our illness. Check out our calendar

In 2023, the Swiss association based in Weinfelden was founded and in 2024 the German association based in Wangen im Allgäu was founded. Together we form a self-help group and both associations work closely together.

Are you also affected and interested in contacting other affected people?

Just write an email to trachealstenose@gmail.com , even better, register as a new member (click on Login in the top right and then Register) . We will contact you immediately. You will automatically be assigned to the correct club. Please note that you must accept our terms and conditions of participation and our privacy policy and upload an ID.