16th April 2024
Annual Meeting 2024
Inborn Errors of Metabolism – Medical Treatment by Internists
Organized by: ASIM in cooperation with DGIM (German Society for Internal Medicine)
Location: Wiesbaden, Germany
Agenda ASIM-Symposium 2024
16th April 2024, time: 09:00 – 10:00 am
General Meeting ASIM
Location: Hotel Dorint · Pallas
Auguste-Viktoria-Straße 15
65185 Wiesbaden
23th – 24th March 2023
Dietetics Meeting, Düsseldorf 2023:
From pediatrics to adult medicine with an eye on cultural diversity
Organized by: Danone Deutschland GmbH Metabolics Expert Centre D-A-CH
Ort: Düsseldorf
NuMe Diätetik-Treffen Düsseldorf 2023_Programm_10012023
25th April 2023
Annual Meeting 2023
Inborn Errors of Metabolism for Internists
Organized by: ASIM in cooperation with DGIM (German Society for Internal Medicine)
Location: Wiesbaden, Germany
Agenda ASIM-Symposium 2023
25th April 2023, time: 09:15 – 10:15 am
General Meeting ASIM
Location: Hotel Dorint · Pallas
Auguste-Viktoria-Straße 15
65185 Wiesbaden
7th September 2023
UPDATE PKU – throwing a glance at the lost generation and news about dental health
Organized by: Danone Deutschland GmbH Metabolics Expert Centre D-A-CH
Webinar
Prog_PKU_Programm-Online_09-2023_online_final
10th October 2023
Update – Therapy of hepatic glycogenosis in adults
Organized by: Vitaflo with moderation by Prof. Klaus Parhofer
Webinar
Vitaflo Einladung GSD Webinar 10 Okt 23 ASIM
1st May 2022:
Annual Meeting 2022
ASIM-Symposium: Inborn Errors of Metabolism in Adults- What are we Facing?
Organized by: ASIM in cooperation with DGIM (Dt. Ges. für Innere Medizin)
Location: Wiesbaden
Agenda ASIM-Symposium 2022
1st May 2022, 1:30 – 2:30 pm
General Meeting ASIM
Hotel Dorint · Pallas
Auguste-Viktoria-Straße 15
D-65185 Wiesbaden
Room London
22nd June 2022
Educational Seminar: Rare Diseases– „Rare but Important“
Organized by: Klinik für Endokrinologie und Stoffwechselmedizin
Charité, Universitätsmedizin Berlin
Location: Berlin
Selten-aber-wichtig_4s_04-2022_1
26th October 2022
„Alkaptonuria, Clinical Presentation, Management and Monitoring“ – Webinar
Organized by: Klinik für Gastroenterologie, Hepatologie und Infektiologie,
UK Düsseldorf
Online Webinar
Einladung AKU Webinar_V2
25th to 26th November 2022
196th RWGIM Convention
Update and Innovation
Organized by: RWGIM – Rhenish-Westphalian Society for Internal Medicine
Location: Gelsenkirchen
RWGIM 2022 Update and Innovation
Rheinisch-Westfälische Gesellschaft für Innere Medizin (Rhenisch-Westphalian Society for Internal Medicine)
Rare Diseases „The Rare within the Frequent“ Online-Lecture
22th September 2021
Organized by: Charité – Universitätsmedizin Berlin
Department for Endocrinology und Metabolic Medicine
Programm ONLINE-FB_seltene-Erkrankungen_4s_09-2021
Please note: prospectively held online – possibly with attendance, depending on pandemic situation
Please check this website for updates: https://seltene-erkrankungen.charite.de
Inborn Errors of Metabolism: Symptoms, Diagnostics, Therapy
10th September 2021 held as Online-Training Programme
Organized by: Deutsche Gesellschaft für Humangenetik e. V. (German Association of Human Genetics)
https://www.syndromtag.de/index.html
https://www.syndromtag.de/de/programm.html
https://www.syndromtag.de/de/allgemeine-hinweise/anmeldung.html
https://ememberline.de/dgfh-muenchen/AHG/va_anmeldung.php?kursid=2055
23rd/24th October 2020
EGS – Galnet 2020 Zoom Webinar on the 23rd and 24th of October 2020 (Galactoseamia)
EGS – GalNet 2020 online conference
01st February 2020
Pregnancy and PKU (Curriculum Modul B)
Training Course to Prevent maternal PKU-Syndrom
Organized by: Universitätsklinik Leipzig
Stoffwechselzentrum der Kinder- und Erwachsenenmedizin
Ort: Leipzig
Vorbereitung von PKU-Patientinnen auf eine Schwangerschaft – Leipzig
26th April 2020
CANCELED: Annual Meeting 2020
Inborn Errors of Metabolism – What are we Facing?
Organized by: ASIM in cooperation with DGIM (German Society for Internal Medicine)
Location: Wiesbaden, Germany
Agenda ASIM-Symposium 2020 – GB
17th July 2020
3. PKU in Focus
New Horizons: Palynziq in Deutschland
Organized by: Biomarin
Type of Meeting: Webinar
ProgrammPKUimFokus Webinar (deutsch) FINAL
Commitment for „Orphan Diseases“: Düsseldorfer Outpatient Clinics for Inborn Errors of Metabolism in Adults is one of the Largest Medical Centres in Germany
Press Release, 14th February 2018
Prof. Dr. Stephan vom Dahl mit dem Bundesverdienstkreuz. In der Ambulanz für angeborene Stoffwechselkrankheiten bei Erwachsenen am UKD werden jährlich über 450 Patientinnen und Patienten betreut. Die Ambulanz war eine der ersten ihrer Art in Deutschland. Foto: UKD/Kesting
Düsseldorf (ukd/dre). As an expert in rare metabolic diseases, he cares for patients from all over Germany at the University Hospital Düsseldorf (UKD). However, his volunteer work for patients suffering from rare diseases goes far beyond that: at the end of January, UKD physician Prof. Dr. med. Stephan vom Dahl received the Cross of Merit on the ribbon of the Order of Merit of the Federal Republic of Germany.
Prof. Dr. Stephan vom Dahl works as a senior physician at the Department of Gastroenterology, Hepatology and Infectiology of the UKD (clinic director: Prof. Dr. Dieter Häussinger). More than 450 patients are taken care of each year at the Clinic for Rare Metabolic Diseases in Adults. The outpatient department was one of the first of its kind in Germany. „Our work for these patients is also an important pillar of the Centre for Rare Diseases at the UKD.“ In this clinic-wide centre, experts from different disciplines work closely together, for example, from Department of Human Genetics or the Children’s Clinic of the UKD.
Currently, around 6,000 different diseases are counted among the rare diseases. Overall, it is estimated that up to eight percent of the population is affected by a rare disease. Prof. von Dahl: „Rare diseases are therefore quite a common diagnosis in its entirety. However, because of the rarity and complexity of each disease, many people, and especially their loved ones, often have to go a long way before a medical professional makes an accurate diagnosis and they can benefit from adequate treatment.“
For Prof. vom Dahl, close and often long-term cooperation with patients and their relatives is important: „Of course, it can take a long time to find a solution to a complex problem. But if you have found this solution and the therapy works: This is an enormous and rapid improvement for the lives of patients and their relatives.“ In the light of these facts, Prof. Dahl volunteers in numerous patient associations, such as the Gaucher Society Germany , the Hemochromatosis Association Germany e. V. (HVD) and the Liver League e.V. based in Düsseldorf.“ He is also editor of the scientific book „Inborn Errors of Metabolism in Adults“.
Together with his colleagues, „Transition Consultation-Hours“ for young patients are offered, who were previously taken care of by pediatricians, but have now reached adulthood. „So we can closely accompany the transition from pediatric medicine to adult medicine. This is especially important for the patients and their families, since they have often been cared for by ‚their‘ doctor for a large part of their lives and now have to establish a new relationship of trust.“ The need for specialized outpatient clinics is high: „Our outpatient clinic for inborn metabolic diseases in adults is one of the largest of its kind in Germany. But even here patients have to wait around six months for an appointment.“
Having been awarded the Federal Order of Merit, Prof. vom Dahl likes to think of it as additional motivation for his work in the clinic, but also for his volunteer work outside the clinic. Clinic director Prof. Dr. Dieter Häussinger agrees: „The award for Prof. Dahl is a great recognition for the work with the patients, who often have a long odyssey behind them, until they meet the right expert. And even then, the work is often arduous, requires patience and enormous expertise. I am very glad that this commitment has now been acknowledged in this form.“
Kontakt:
Prof. Dr. med. Stephan vom Dahl
Senior Physician
Department of Gastroenterology, Hepatology and Infectiology
(Clinic director: Prof. Dr. Dieter Häussinger)
University Hospital Düsseldorf
Senior Physician Office: +49- (0)211 / 81-04041
stephan.vomdahl@med.uni-duesseldorf.de
Adults with inborn errors of metabolism continue to have no legal claim to specialist medical care – § 116 b paragraph 2 of SGB V remains unchanged. The ASIM will continue to remain politically active in order to repeal this unfounded and absurd restriction in §116.
Press Release of the DIG PKU concerning TSVG
In a query addressed to politicians, the DIG PKU demands the warranty of an adequate care for patients with inborn errors of metabolism
ASIM Adopts European Recommendations for Phenylketonuria
The ASIM approves of the publication of the new guidelines for diagnosis and treatment of patients suffering from Phenylketonuria from January 2017. Published in LANCET Diabetes & Endocrinology, January 2017. The ASIM recommends the implementation of the new guidelines to all Centres for the Treatment of Metabolic Diseases.
http://thelancet.com/journals/landia/article/PIIS2213-8587(16)30320-5/abstract
The press release No. 09/2017 by the Common Federal Committee, Germany (Gemeinsamen Bundesausschuss) under §1 SGB V: Dietetic Therapy for Patients Suffering from Rare Inborn Errors of Metabolism and Mucoviscidosis to be available on presription
Pressemitteilung Nr. 09-2017 vom 16. März 2017 des G-BA – Ernährungstherapie (Press Release)
