Dear friends and families
living with aHUS, C3G or IC-MPGN
We hope to see you at our next patient and family weekend, which
will take place from 28-30 November 2025 in Heidelberg, Germany,
a short train ride from Frankfurt Airport.
During the meeting you will have the opportunity to meet and learn
from other affected individuals, as well as nephrologists, scientists,
pharmaceutical companies, and other experts with a strong level of
experience specific to aHUS, C3G and IC-MPGN.
We would be delighted to have you join us.
High-level agenda
The meeting will run in English and in German in two different rooms
Friday 28 November
Afternoon program where we will be introduced to the Heidelberg Complement
Laboratory, and learn about the values they are measuring in the blood.
Furthermore, the patients will have the opportunity to enrol in the CompCure
study. Social dinner close to the beautiful Christmas market in Heidelberg.
Saturday 29 November
We will learn about the diseases and the therapies available to treat them.
Hereafter we will get input on how to optimally manage diet, nutrition and mental
health. We will also hear about the support systems available in many countries.
Finally, we will learn about the importance of data sharing to improve the
understanding of the diseases and how to treat them. Social dinner close to the
meeting venue.
Sunday 30 November
Group workshops on specific topics suggested by patients, e.g. care for children,
transition from paediatric to adult care, family planning, etc. to be defined by the
participating patients and families. The meeting will end after lunch-time.
Childcare for the youngest participants will be offered on
Saturday and Sunday.
CompCure wants to support your participation in the meeting.
A few rooms have been prebooked at the
Jugendherberge Heidelberg International
Tiergartenstr. 5, 69120 Heidelberg,
where we will help the first 30 registered participants
by covering 50% of their accommodation costs.
The hostel is located just a 15-minute walk from the venue at Marsilius College, Im Neuenheimer Feld 130.1, 69120 Heidelberg.
