The early recognition and treatment of amyloidosis in order to minimise the effects of decline in health. Our focus is therefore on the improvement of diagnosis and the treatment of patients with amyloidosis. In addition, we offer information to patients, physicians and other individuals involved.
You can read here how you can support us financially.
Who we are
The Groningen Amyloidosis Center of Expertise is a collaboration of various disciplines at the University Medical Center Groningen, engaged in diagnosis and treatment of systemic and localised amyloidosis. The department of Internal Medicine has a coordinating role.
|First evidence that cardiac ATTR amyloidosis can be cleared with antibodies||At the European Heart Failure Congress in Prague this month, the results of the first human study with an antibody against ATTR amyloidosis were presented. The Groningen Amyloidosis Centre of Expertise (GrACE) was one of the 6 European research centres involved. The study showed for the first time that the treatment was safe and showed an approximately 50% reduction in the amount of amyloid in the heart 12 months after treatment. The results of this study were published in New England Journal of Medicine.
Heart failure due to ATTR amyloidosis is a serious disease with a poor prognosis. Patients have symptoms of shortness of breath and reduced exercise capacity due to deposition of protein aggregates (amyloid) in the heart. This causes a thickened and stiff heart muscle. Current treatment consists of stabilizing the disease with drugs. Until now, there was no way to clear away the amyloid already present.
“Capturing amyloid in the heart is a logical step to improve heart function,” according to Peter van der Meer, cardiologist at UMCG and one of the co-authors of the paper published in the New England Journal of Medicine. “The results of this phase 1 study are promising, but more research is needed to determine the effectiveness of the drug on symptoms and prognosis.”
Hans Nienhuis, internist at UMCG and coordinator of the Groningen Amyloidosis Centre of Expertise: “A treatment to clean up amyloid would be an important addition to current treatments that allow us to reduce the production of new amyloid and, in the most favourable case, stop disease progression. Patients often have a high burden of disease; this treatment has the potential to reduce that. This study shows that by administering an antibody directed against amyloid, it is possible to induce the immune system to clear the amyloid.”
According to Van der Meer and Nienhuis, there will be follow-up research, which will focus on improving symptoms and prognosis. The UMCG will also play a role in this research.
|Telephone nursing consultation hour opened||On Monday between 15:00 and 16:00 and on Wednesday between 10:00 and 11:00 you can ask your questions to Sanne Jelsma, nurse consultant||You can reach her by phone on +31 50 361 29 68 or send a message in mijnumcg.nl||See also our Contactpage|
|Cardiac amyloidosis quartet game||Collaboration between patient representatives and the Amyloidosis Expertise Center in the UMCG (GrACE) has led to the design of a quartet game about cardiac amyloidosis.||Patient organization Amyloidosis Netherlands Foundation (SAN) is the publisher of this quartet game and thanks to financial support, this game is available to interested physicians and other interested parties.|
|“Living with hereditary amyloidosis”, an impressive documentary||This documentary tells candidly what it is like to grow up in a family with hereditary amyloidosis with a special contribution from Dr Bouke Hazenberg.||The film was made possible by Pfizer in collaboration with the patient association Stichting Amyloidosis Nederland. They will distribute the film worldwide to (potential) patients and their families as well as to doctors. Production and interview: Volle Maan.||The link for the approximately 30 minute film, with English subtitles, can be found here|
|XIX. International Symposium on Amyloidosis||May 26 – 30, 2024||This symposium will be held in the Mayo Civic Center in Rochester, Minnesota, USA||Keep an eye on the website of the ISA or the Mayo Clinic for more information|
|How do we deal with the corona virus at the UMCG (COVID-19)?||On this page you will find all information about how we deal with the corona virus at the UMCG (COVID-19)|
|The International Society of Amyloidosis (ISA) has given recommendations for the management of amyloidosis patients during the COVID-19 pandemic||View the latest version here (April 20, 2020)|
|Stichting Amyloïdose Nederland (SAN)||A new date for the meeting day will follow. Watch the website or newsletter of the Foundation.||View the presentations on the information day of June 18, 2022.||View the presentations held on the Informationday of September 25, 2021.||View the presentations held on the patient meeting day of March 13, 2021.|
|Expertisenetwerk Amyloïdose||December 2019 on-line|