Wien, 11.09.2018 New hope for patients with Huntington’s disease –
Congress brings researchers and sufferers together in Vienna

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Huntington’s disease is an incurable genetic brain disorder. From 14-16 September the European Huntington’s Disease Network will meet at the Austria Center Vienna to discuss the latest breakthroughs that could point towards a future cure. It also gives patients and their families living with the disease practical help and the chance to find out more about the condition at a series of ‘meet the expert’ events. 

“A central issue surrounding Huntington’s disease is the availability of data: because the disease is so rare, gathering the necessary data is a slow process, but one that our colleagues in Austria provide active support with. And now the results of different studies are available, which go a long way towards helping researchers,” said Prof. Jean-Marc Burgunder, Head of the Swiss Huntington Competence Centre and Chairman of the European Huntington’s Disease Network. 

Information and networking: meeting place for researchers and patients 
In addition to discussing the latest treatments and biological findings surrounding Huntington’s disease, the Congress in Vienna also has a strong focus on networking: this gives patients and their loved ones a chance to meet others in a similar situation as well as talk to researchers and Huntington centre representatives. “Particularly in the immediate aftermath of diagnosis, it is important for patients to see that their symptoms are being taken seriously – and friends and relatives’ need for information is very high, as you would expect. The question of having children if you're a carrier of the faulty gene is also highly sensitive – our job is to provide information and support,” explained Burgunder. 

600-800 Huntington’s patients in Austria
Huntington’s disease, formerly also known as St. Vitus Dance, is a rare hereditary disorder which is caused by a gene mutation: the protein formed using this flawed genetic information is limited in its effectiveness and accumulates in deposits in the brain. These deposits cause brain cells to die off, triggering the onset of the disease – mostly in individuals aged 40-45. Huntington’s disease occurs worldwide but is most commonly found in populations with a European background: statistically around 6-12 of 100,000 people are born with the genetic defect. In Austria there are currently around 600-800 Huntington’s patients, with both sexes affected equally. 

Fight against symptoms – and causes
To date, only the symptoms of Huntington’s disease have been treated, such as the characteristic movements, redolent of a dance, which are the source of the condition’s historic name. A recent major study also involving Austrian researchers and patients tested a medicine which suppresses these involuntary movements. Huntington’s is also associated with cognitive disruptions which make it difficult to learn new things, establish contexts and lead an independent life. For patients, however, mental disorders such as anxiety and depression represent the most serious burden. The results of a recent study give grounds for optimism that it will be possible to treat the causes of the diseases using medication: “This is without doubt a major step forward for research as the treatment is very closely targeted at the genetic mutation: transmission of the genetic information is blocked, resulting in fewer protein deposits and a decline in functional impairment in the brain,” Burgunder confirmed. While the results of the study are highly promising in terms of effectiveness, it was an initial safety study in which tolerance was only established for a very small number of individuals. A pure efficacy study involving a larger number of patients is currently under preparation. “Unfortunately, it is unlikely that we will see any rapid signs of significant changes due to the protracted progression of the disease. However, there are high hopes of positive results over the coming 4-5 years,” he concluded. 

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Prof. Dr. Jean-Marc Burgunder (c) Prof. Dr. Jean-Marc Burgunder
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About IAKW-AG

Internationales Amtssitz- und Konferenzzentrum Wien, Aktiengesellschaft (IAKW-AG) is responsible for maintaining the Vienna International Centre (VIC) and operating the Austria Center Vienna (ACV). The Austria Center Vienna is Austria’s largest conference centre, with 24 halls, 180 meeting rooms, and some 22,000m² of exhibition space, and is one of the top players on the international conference circuit. 

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Carina Fuchs
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Tel: +43-676-84 565 33 32
Email: carina.fuchs@acv.at