Collaboration between industry and patient groups
Collaboration between industry and patient groups During the May Awareness Month this year I have been visiting 3 pharmaceutical companies with upcoming or ongoing trials in HD. It has been inspiring to meet with all the people who work to realize therapies for pateints. We have had fruitful discussions about facilitators and hurdles in the long […]
The importance of nutrition in HD care
The importance of nutrition in Huntington’s Disease care Changes in eating and nutrition are not just side effects in HD – they are a central part of the disease’s progression. From early, often unexplained weight loss to more complex challenges such as swallowing difficulties, nutrition becomes an essential pillar in maintaining health, independence, and quality […]
UK regulators positive to evaluate Huntington treatment
Community Update UK regulators positive to evaluate Huntington treatment! UniQure announced today that the company has presented the data from the AMT-130 therapy to the regulators in the UK (MHRA). Some of you may remember that UniQure presented promising results from the study last September. The company expected to present the study results to the US […]
Understanding what happens inside the brain in Huntington’s Disease
Understanding what happens inside the brain in Huntington’s Disease Huntington’s Disease (HD) is a complex neurological condition that evolves over time, affecting movement, cognition, and behaviour. As many of the HD-related changes are invisible – since they occur in the brain – understanding what the disease does neurologically is essential to provide effective, compassionate care. […]
2026 May Awareness: More Than HD – Be Part of It
More Than HD – Be Part of It A global awareness and engagement campaign for Huntington’s Disease “More Than HD – Be Part of It” The European Huntington Association (EHA) and the International Huntington Association (IHA) are joining forces again, launching a joint global campaign this May to mark Huntington’s Disease Awareness Month, under the […]
Novartis Community Update
Community Update Novartis shares important progress on Huntington’s Disease Research We have received an interesting update from the pharmaceutical company Novartis about the medicine they currently are testing for Huntington’s Disease. Do you remember the study named PIVOT-HD done a little while ago of a company named PTC Therapeutics? People who took part in this […]
Breaking the Silence: Árni Gautur Arason opens up about living Huntington’s Disease
Breaking the Silence: Árni Gautur Arason opens up about having HD Speaking up about living with HD is never easy and it takes courage to do so. Árni Gautur Arason, a former international goalkeeper, once one of the most recognised names in Icelandic football, has returned to the field where he played for more than […]
Why psychological support matters in Huntington’s disease
Why psychological support matters in Huntington’s Disease The importance of mental health is increasingly recognized, and investing in therapy has become a common and necessary practice. For individuals living with Huntington’s Disease (HD), it is especially crucial to receive psychological support, along with their families, friends, and caregivers. HD can be an overwhelming and heavy […]
IDEA-FAST Patient Survey
IDEA-FAST Patient Survey Fatigue and having trouble sleeping are some of the hardest symptoms for people with long-term health conditions. These symptoms are common, but they are still difficult to measure and treat properly. The IDEA-FAST project is a research study across Europe that is looking at how digital tools—like wearable devices, mobile apps, and […]
uniQure Provides Regulatory Update on AMT-130 for HD
Community Update uniQure Provides Regulatory Update on AMT-130 for Huntington’s Disease UniQure announced today that the US authorities (FDA) require the company to collect more data before they can ask for market approval for the gene therapy AMT 130. Some of you will remember that UniQure announced positive data on the efficacy of the therapy back […]