Category: Support

New project: e-health for Huntington’s patients and families

In order to ensure good care for Huntington patients and their families, the HEALTHE-RND project aims at developing an e-health platform. The platform will ensure access to help and information – regardless of where people live. Written by Alzbeta Mühlbäck, MD What’s it all about?  Huntington’s disease (HD) require intensive cooperation between different medical disciplines and…
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“It could be the beginning of a great new adventure!”

It was summer 2017 when I stumbled on the webpage of the European Huntington Association. At that time I was taking my first steps in the Huntington world. Having tested positive for the gene a few years earlier, I was now longing to be part of a community. Written by Rob Haselberg, first published in…
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Sleep better at night

Many people with Huntington’s disease have trouble sleeping. Managing or treating the problems directly may be beneficial. Find some simple tips on how to improve sleep below. Short-term sleep deprivation has no lasting damage, but it impacts mood. Without enough sleep, people become irritable, unreasonable and short-tempered. At HDBuzz we can read that people with Huntington frequently suffer from sleep abnormalities and…
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Safety with style

Ribcap was formed over 10 years ago to provide protective headgear that works to combat various neurological conditions – without compromising personal style. The headgear is designed for everyone facing all sorts of life challenges.

Why you should join our conference!

Have you heard about our conference but not yet decided if you want to go? Cristina Ferreira went all by her self from Portugal to Bulgaria to join us in 2017. Read her story: I come from a Portuguese Huntington’s disease family. My mother was diagnosed with Huntington’s in 2012. At this point she was already…
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May is Huntington’s disease awareness month!

Over the last years, May has been Huntington Disease Awareness Month. Starting off at the Huntington’s Society of Canada, Awareness Month and the #LightItUp4HD campaign has grown into a global movement. During May, buildings, monuments and statues worldwide will be lit up in blue and purple. Blue to raise awareness of Huntington’s disease, purple of Juvenile…
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Bright Lights Big City: HD-COPE descends upon New York City

The HD-COPE committee held its second annual meeting in the Big Apple, February 21-24, 2019. This year the committee welcomed members from Africa, Australia, China and South America. Now making it an international power house in the HD community.  Written by Dina de Sousa, member of HD-COPE HD-COPE, the Huntington’s Disease Coalition for Patient Engagement, was…
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It’s Rare Disease Day!

Today is the twelfth international Rare Disease Day coordinated by EURORDIS. This year’s theme is ‘Bridging health and social care’. From rarediseaseday.org: “According to the first ever Europe-wide survey on juggling care and daily life with a rare disease carried out by Rare Barometer, 8 in 10 patients have difficulties completing basic daily tasks. Communication…
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The first Italian youth association established

December 1st 2018, the first Huntington association for young people in Italy was presented. Their goal is to raise awareness and enhance collaboration across borders.

The power of music therapy – Video!

For Music Therapists, Sunniva Ulstein Kayser, music is an important channel for communication. Read more about how music therapy can help in establishing and maintaining interaction with Huntington’s patients. By using Sound Beam – a music installation that transforms movement into music – Sunniva and patients at the Huntington department at NKS Olaviken is able…
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