ADTKD -
News
Never before have there been so many research papers on
autosomal dominant tubulointerstitial kidney disease (ADTKD) as this time at the
American Society of Nephrology's (ASN)
Kidney Week, which takes place from October 24 to 28 in San Diego. Also European working groups are represented . Here is an overview of
the
abstracts.
DIFFERENT DISEASE PROGRESSIONS IN ADTKD
What influence do gene networks have?
ADTKD is classified as a monogenic disease, as the disease is usually
caused by a single variant in a family. However, there can be considerable
differences within a family as to when the disease breaks out and how quickly it leads to kidney failure. Scientists have been looking for explanations for these
different disease progressions for some time. One possible cause is so-called
modifying genes.
More...
ERA CONGRESS 2024
ADTKD diagnostics in Europe: Where do we stand and what is needed?
Under the title "ADTKD genetic diagnostics in Europe: Where do we stand and what is needed?", our patient organization was represented with its own contribution on thestatus of ADTKD diagnostics in Europe. The most importantresultof our study: there is alack of comprehensive ADTKD-MUC1diagnosticsin Europe. You can download thee-posterhere.More...
This year's conference of the European Kidney Society (ERA) will take place from May 23 to 26 in Stockholm. The motto is "Rethinking kidney health, redesigning kidney care." Several scientific contributions deal with ADTKD (Autosomal Dominant Tubulointerstitial Kidney Disease). The main focus is diagnostics. You can find a preview here. More...
KICK OFF FOR EUROPEAN ADTKD REGISTRY
ADTKD-Net brings together patient cohorts
In March 2024, scientists, basic researchers and nephrologists as well as a patient representative from 10 European countries met in Berlin to kick off the
ADTKD-Net research project. Existing
national cohorts will be
brought together. This is an important prerequisite for clinical studies.
More...
ASN KIDNEY WEEK 2023
Research on ADTKD
At the
Kidney Week
of the American Society of Nephrology (ASN) from November 2 to 5, several
research papers on ADTKD
were presented. Here you can find an overview.
More...
REPORT FROM THE GERMAN NEPHROLOGY CONFERENCE 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...
TED Talks: ADTKD-MUC1 as a Model Disease
Anna Greka on discovering the cause of rare kidney disease
Physician-scientist
Anna Greka researches rare diseases at the Broad Institute. Through what she calls "molecular detective work," she and her team were able to determine the cause of the previously mysterious kidney disease ADTKD - and even develop
a promising treatment. Her work could lead to treatments for more than 50 other diseases, including ALS and Alzheimer's. Watch the video here (20 min.).
More...
HIF-STABILIZING AGENTS
Anemia drug accelerates disease progression
Anaemia (anaemia) should rather not be treated with HIF stabilisers 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...
ERA CONGRESS 2023
New research on ADTKD
New research on
ADTKD-MUC1
will be presented at this year's
European Renal Association
(ERA) congress. One contribution comes from Germany.
More...
INTERNATIONAL ADTKD SUMMIT - WHAT'S NEW?
Study program starts in 2023
In October 2022, the 3rd International Virtual ADTKD Summit took place. The two-day meeting allows
scientists
and
patients from all over the world
to exchange the
latest findings on ADTKD. An important topic was also the
trial activities
with a potentially effective compound for the ADTKD subtypes
MUC1
and
UMOD
starting in 2023. You can find the video recording here.
More...
Several research papers on ADTKD will be presented at the American Society of Nephrology (ASN) Kidney Week, Nov. 3-6, including one from Germany. Topics include the international registry study, SGLT2 inhibitors in ADTKD, HIF stabilizers in MUC1, COVID19 in in ADTKD-MUC1 and UMOD, and preclinical findings on potential new therapies. More...
The Rare Kidney Disease Foundation (RKDF) cordially invites all ADTKD patients and their families to its Virtual Patient Roundtable 2022. It will take place on Sunday 18 September at 23:00 European time (5:00 am EDT). More...
NEWS FOR PATIENTS WITH ADTKD-MUC1
Biomarker study starting in September 2022 / Clinical trial in 2024
In July, we held a virtual event with Dr. Anthony Bleyer of Wake Forest School of Medicine, a world leader in research on the disease. The key information is summarised here. More...
Those affected call for a round table
On the occasion of German Organ Donation Day on 4 June 2022, the German ProTransplant initiative appeals in an open letter to the Federal Minister of Health, Karl Lauterbach, and the Ministers of Health of the federal states to convene a round table as soon as possible. The reason for this is the continuing low in organ donation figures. More...
OPT OUT MUST BE PUT BACK ON THE POLITICAL AGENDA
German Society calls for amendment of the Transplantation Act
In view of the majority vote in Switzerland for the introduction of the objection solution, the German Society for Surgery is calling on politicians to put this issue back on the political agenda in Germany as well. It is a matter of "noticeably improving organ donation". More...
ERA CONGRESS 2022: A POTENTIAL THERAPY FOR ADTKD-MUC1
Causal research led to the identification of a suitable compound
ADTKD-MUC1 results from the accumulation of a protein in the cells of the renal tubules. Exact research into misguided intracellular transport mechanisms led to the already known active ingredient BRD4780. More...
CONGRESS OF THE EUROPEAN RENAL SOCIETY (ERA)
From May 19 to 22, 2022, the annual ERA conference took place in Paris. The motto was: "Innovation, Prevention, Preparedness". Abstracts on ADTKD were also submitted. More...
Initial data from a small observational study ambivalent
SGLT2 inhibitors may delay the progression of chronic kidney disease (CKD). Whether this is also true in ADTKD is currently unclear. Preliminary data were collected in a small observational study. Conclusion: It is complicated. More...
CALL FOR ACTION PLAN FOR PATIENTS WITH CHRONIC KIDNEY DISEASE
European Kidney Health Alliance points to major deficits
The European Kidney Health Alliance EKHA has called for significantly more efforts to tackle chronic kidney disease (CKD) in the EU and for a European action plan. It is estimated that CKD will be the fifth leading cause of death worldwide by 2040. But CKD is also a cost factor. More...