08/10/2026
Make your voice heard! 🗣️
We need your voice!
How should diseases related to pruritus and prurigo be clearly described and defined?
That is exactly what an international project by IDEOM and ILDS, led by Sonja Ständer and Brian Kim, is working on.
Together with doctors, scientists, patient organizations and, most importantly, people living with these conditions, we want to develop clear and consistent definitions for different diseases.
The current project focuses on:
• Lichen amyloidosus
• Somatoform pruritus – symptoms in which psychological factors play an important role
• Drug-induced pruritus – symptoms caused by medication
• Paraneoplastic pruritus – symptoms associated with cancer
• Postherpetic pruritus – symptoms that can occur after shingles
We are looking for patients!
If you live with one of these conditions, we would like to invite you to share your perspective.
You will be shown several statements about the condition and asked whether you think each statement is appropriate. Depending on the condition, there will be no more than 10 statements to rate.
⏱️ The survey takes about 20 minutes, and you only need to participate once.
How can you take part?
Simply send us a DM! 📩
Please include:
👉 Your name
👉 Your email address
and let us know which of the conditions listed above you have.
Please note: Before taking part, we will need proof that you have the condition. If you meet the participation requirements, you will then receive a link to the survey and can submit your responses.
📅 Please contact us by 1 November 2026.
Your experience as a patient is particularly valuable to this project. Living with a condition gives you an important perspective on how that condition should be described and understood.
Make your voice heard and be part of this important project! 💙
