Author: Phylis Kitema

The first Huntington patients ever have received gene therapy!

The first two patients in uniQure’s in-human gene therapy trial for Huntington’s disease (HD) have now been treated. The dosing of the drug called AMT-130 in the trial marks a significant milestone for uniQure and for Huntington patients in need of treatment options. At this stage, safety, tolerance and efficacy of the treatment are being tested. 26…
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Is the COVID-19 pandemic affecting tominersen studies?

Generation HD1 Roche would like to reassure you that tominersen studies are ongoing at clinical trial sites around the world, where local guidance allows. The GENERATION HD1 trial is continuing, in collaboration with study participants, clinical trial investigators and health authorities, while also ensuring patient safety and data integrity throughout the studies given the ongoing…
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Pridopidine and Michael Hayden makes comeback!

Since Dr. Michael Hayden left his previous job in Teva Pharmaceutical Industries, he has wanted to finalize the project Teva decided to terminate late 2017 – the Pridopidine clinical trial.  In the last couple of years Dr Hayden has established the company Prilena and taken over the rights to Pridopidine.  Yesterday Prilenia announced that they…
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What does COVID-19 mean for Huntington’s disease families and HD research?

What does COVID-19 mean for Huntington’s disease families and HD research? From: HDbuzz COVID-19, short for coronavirus disease 2019, has taken the world by storm in almost every sense – many people have been infected with the SARS-CoV-2 virus, it’s created shopping pandemonium in stores, and many people are isolated at home. But behind that…
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Huntington’s disease and the COVID-19 pandemic – a difficult combination

On monday, the 6th of April, 2020, The European Huntington Association (EHA) and the European Reference Network for Rare Neurological Diseases  (ERN-RND) arranged an open webinar titled “Huntington´s Disease and the COVID-19 Pandemic – a difficult situation”   The organisers of the webinar acknowledges that COVID-19 – with all the restrictions it has, can cause a lot of…
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COVID-19 Info and advice

What is COVID-19? COVID-19, short for coronavirus disease 2019, is an infection caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). SARS-CoV-2 is a newly identified pathogen that has not previously been seen in humans and is highly contagious. Though it belongs to the same category of viruses as SARS coronavirus (SARS-CoV) and influenza viruses, SARS-CoV-2 is a different…
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Excersice

It is important to try and stay as physically active as you can during this time – both for your physical and mental health. Even though we encourage you to maintain social distancing, most countries now allow people to go for a walk, run or bike. Social distancing means only coming in close contact with…
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Mental Health & COVID 19

How your mental health might be affected The spread of coronavirus is a new and challenging event. Some people might find it more worrying than others. Try to remember that medical, scientific and public health experts are working hard to contain the virus. Most people’s lives will change in some way over a period of…
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Webinar: Huntington’s disease and COVID-19 – a difficult combination

We understand that the COVID-19 pandemic can cause a lot of strain, stress and isolation on Huntington’s disease (HD) families, patients and relatives. All the restrictions imply big changes in daily life and the routines are hard to maintain. We hear that families struggle, feel scared and isolated. In order to support you in this…
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Staying well when social distancing

The outbreak of coronavirus disease 2019 (COVID-19) may be stressful for people. Fear and anxiety about a disease can be overwhelming and cause strong emotions in adults and children. Coping with stress will make you, the people you care about, and your community stronger. Everyone reacts differently to stressful situations.  Webinar In order to support you…
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