Digital Consultation: “Meet the expert”

a group of people posing for a photo
© private

5-6 pm CET

Online via Zoom

Format: Presentation of the patient brochure with recording, followed by an open Q&A session without recording, in English

Deadline of registration: 11.12.2024

What to Expect

If you have a child with a very rare disease, you will find that many of your questions can only be answered by a small number of doctors and researchers.

Our digital consultation “Meet the expert” aims to give you the opportunity to ask specific questions about PCH2 in a live online meeting.

For our first consultation on 11 December 2024 at 5 pm CET, PD Dr. Wibke Janzarik and Alice Kuhn will first present the new English PCH2 patient brochure. In the subsequent open Q&A session, both speakers, as well as Prof. Simone Mayer and her team, will be available to answer your questions live.

Attending physician PD Dr. Wibke Janzarik is head of the neuropediatric clinic at the Medical Center of the University of Freiburg. In addition to her research on PCH2 (gastrointestinal symptoms, lead of the second PCH2 Natural History Study), she also treats affected children and their families.

Alice Kuhn is a medical doctor and, as a doctoral student at the University of Freiburg, conducted the second PCH2 Natural History Study. She also played a leading role in the second patient brochure.

Prof. Dr. Simone Mayer is a neurobiologist who grows stem cell models in the lab to investigate the underlying disease mechanisms of PCH2. Her long-term goal is to use this basic research to find a treatment for the disease.

A summary of the current study conducted by Prof. Simone Mayer can be found here.

For better planning, we would ask you to register for the event using the registration form below. You are welcome to send us your questions in advance via the “Remarks” field in the registration form to allow our experts to optimally prepare for the Q&A session.

We look forward to seeing you there!

Speakers

PD Dr. Wibke Janzarik

PD Dr. Wibke Janzarik

Prof. Dr. Simone Mayer

Prof. Dr. Simone Mayer