HEREDITARAY
KIDNEY DISEASE
ADTKD
Support Group
ADTKD is the medical term for a group of genetic kidney diseases and stands for
Autosomal
Dominant
Tubulointerstitial
Kidney
Disease. Matryoshka symbolizes the inheritance from generation to generation.
This website provides information for affected families as well as doctors, supporters and sponsors.
ADTKD-Net: Kick off for European ADTKD register
In March 2024, scientists, basic researchers and nephrologists as well as a patient representative from 10 European countries met in Berlin at Charité University Hospital to kick off the ADTKD-Net research project. Existing national cohorts will be brought together as part of the established platform of the European Reference Network for Rare Kidney Diseases (ERKNet).
ERA e-Seminar 2023
Eric Olinger reports on the latest findings. Topics include the known
subtypes, clinical characteristics, epidemiological data and
diagnostic challenges. These mainly concern
ADTKD-MUC1
and could be overcome in the future by new methods such as
VNtyper. Other focal points are differential diagnosis and
therapeutic approaches for
UMOD
and
MUC1.
To the video (external page)
ADTKD
is the medical term for a group of
genetic kidney diseases
and stands for
Autosomal Dominant Tubulointerstitial Kidney Disease. Each of these diseases is caused by a specific gene mutation that causes kidney function to weaken.
Research into an ADTKD therapy is being conducted in many countries. The work is most advanced in the USA. A compound has been identified that can at least delay the disease in ADTKD-MUC1 in laboratory trials. A clinical trial with is planned for 2024.
"Every nephrologist has an
ADTKD-Family."
Anthony Bleyer, Wake Forest University
Die Diagnose The only reliable
ADTKD diagnosis is a
genetic test. This requires a blood sample. Here you can find out when and why such a test can be useful and how exactly it is carried out.
TED Talks 2023:
ADTKD-MUC1
as a Model Disease
Anna Greka
researches rare diseases at the Broad Institute. Through hypothesis-driven research, or "molecular detective work" as she calls it, she and her team have been able to identify the cause of the mysterious
kidney disease ADTKD
- and even develop a
promising treatment. In the
TED Talk, she talks about the potential impact of her discovery on other diseases such as ALS and Alzheimer's disease.
More...
Report from the Nephrology Congress 2023
Genetic testing must be better established and reimbursed
ADTKD Vision Cure, an
organization for patients
with
ADTKD, has been in existence for almost two years. It was represented for the first time at the German Nephrology Conference 2023 with its own poster. The aim: to
raise awareness
. The
poster
is available for download.
More...
HIF-stabilizing agents in ADTKD-MUC1
Anemia drug accelerates disease progression
Anaemia should rather not be treated with
HIF
stabilizing
agents
in patients with the disease ADTKD-MUC1
who
do not require dialysis. This is suggested by the results of a
preclinical study
published by researchers at the University of Erlangen.
More...
In October 2022, the 3rd International Virtual ADTKD Summit was held. The two-day meeting enables scientists and patients from all over the world to exchange the latest findings on ADTKD. An important topic was also the planned trial activities with a potentially effective compound for the ADTKD subtypes MUC1 and UMOD .
Here you can find the
video recording.
At the
Kidney Week of the American Society of Nephrology (ASN) in November 2023, several research papers on
ADTKD
were presented. Here you can find an overview of the abstracts.
More...
Here you find video recordings of an
ADTKD webinar held in October 2022 by our US partners, as well as many other links to organisations working on rare kidney diseases.
We as family are affected by ADTKD ourselves. Our goal to provide information for other ADTKD families as well as for nephrologists treating ADTKD patients. We also aim to find other ADTKD patients in Europe.
Events
23.-26.5.2024
European Renal Association (ERA) Congress
Stockholm, Sweden, & virtuell
23.-27.10.2924
American Society of Nephrology Kidney Week
San Diego, California, USA
https://www.asn-online.org
Highlights
VISION CURE
A Story of Hope
Two families with a mysterious kidney disease and a researcher whose curiosity is piqued. A
feature in the American STAT magazine describes how the cause of
ADTKD-MUC1 disease was found and how this discovery led to a
potentially effective therapy. The main protagonists are scientist
Anna Greka from the Broad Institute, nephrologist
Anthony Bleyer from Wake Forest University and the
Nelson family.