HD Focus

News Across the Globe

Two pharmaceutical companies announce positive results

HDA - UK

Updates from PTC Therapeutics and uniQure on their huntingtin-lowering trials

HDBuzz (English)

On 21st June, both PTC Therapeutics and uniQure shared data from their respective clinical trials, both testing huntingtin-lowering as an approach to treat HD, but with different types of therapies. In this article we go through the data they each presented, what it all means and the next steps the companies will be taking.

Treating HD with huntingtin-lowering

Both PTC and uniQure’s approaches to treating Huntington’s disease draw on the basics of HD genetics. A gene called huntingtin becomes expanded, leading to an extra-long protein that is thought to damage brain cells. Dozens of pharmaceutical and biotech companies are working on therapies that try to decrease the amount of that long, faulty huntingtin protein, an approach known as huntingtin lowering. PTC and uniQure are two such companies which have ongoing clinical trials in this area although their approaches are quite different.

PTC: getting at genes by popping a pill?

Dance 100 and our supporters go global!

Scottish Huntington's Association

  This amazing shot won first prize in the Stronger Together in the HD Community competition organised jointly by International Huntington Association and European Huntington Association.   The competition was open to organisations and family members across the world as part of the organisations’ shared Huntington’s Disease Awareness Month campaign

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The post Dance 100 and our supporters go global! appeared first on Scottish Huntington's Association.

Loneliness awareness week

HDA - UK

Disappointing news about our request for NICE Guidelines

HDA - UK

HSG2023 - gericht op Kennisagenda HKNN

Nieuws - Vereniging van Huntington

De Huntington Stimulation Grant 2023 is open voor aanmeldingen

De Vereniging van Huntington (VvH) vindt het uiterst belangrijk dat wetenschappelijk onderzoek naar de ziekte van Huntington in Nederland wordt gedaan. Daarom stelt de VvH dit jaar een bedrag van maximaal € 50.000,- beschikbaar voor veelbelovende, kleinschalige studies met een innovatief karakter.

Recent heeft het Huntington KennisNet Nederland haar Kennisagenda gepubliceerd (zie https://www.hknn.nl/onderzoek/kennisagenda). In dit werk hebben ze de belangrijkste zorgaspecten in kaart gebracht en mogelijkheden tot onderzoek hierbinnen geïdentificeerd. De VvH heeft daarom besloten om voor 2023 projecten te honoreren die zich richten op de onderzoeksmogelijkheden binnen de Kennisagenda. We nodigen iedereen, die binnen dit thema onderzoek doet, uit om een voorstel in te dienen. Let op: dit jaar kan er voor het eerst meer dan één project worden toegekend mits het totale bedrag van € 50.000,- niet wordt overschreden.

Meet Strictly fundraising champ Trishia!

Scottish Huntington's Association

Ballroom beginner Patrishia Adams from Easterhouse entered a prestigious dance competition – then gave herself just 10 weeks to learn all the steps and raise as much money as possible for Scottish Huntington’s Association. The 42-year-old anaesthetics nurse hadn’t danced since her ballet and tap days 30 years ago. But

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The post Meet Strictly fundraising champ Trishia! appeared first on Scottish Huntington's Association.

Die Europäische Huntington-Vereinigung Conference

Schweizerische Huntington Vereinigung

EHA freut sich, Sie einladen zu können, sich der HD-Gemeinschaft auf der bevorstehenden Konferenz in Blankenberge, Belgien, vom 19. bis 22. Oktober anzuschließen.  Die Konferenz steht allen offen, die in ihrer Familie mit Huntington leben oder sich als Angehörige, Freunde, Verwandte oder Freiwillige für die Krankheit interessieren

Wellbeing focus group

HDA - UK

Carers Week 2023

HDA - UK

Volunteers week 2023

HDA - UK

National Lottery funding celebration

HDA - UK

2023年度 JHDN総会&交流会のご案内

日本ハンチントン病ネットワーク

日時:2023年6月24日(土) 13:30~17:00 ハイブリッド形式場所:東京駅近辺の会議室 ※ZOOM会議URLは会員メーリングリストでお知らせします。    お問合せは事務局メールjhdn@mbd.nifty. […]

Opgroeien in een Huntingtongezin

Nieuws - Vereniging van Huntington

Ben jij opgegroeid met een ouder met Huntington? En ben je nu tussen de 18 en 35 jaar?

Start here!

HDBuzz (English)

Welcome to HDBuzz! This special page is for people who are new to Huntington's disease, or new to the world of HD research.

Reading the articles linked here will help you pick up the basics of what Huntington's disease is, and get up to speed with some of the most promising things scientists are doing to come up with effective treatments for HD.

Huntington's disease - the bare essentials

* Our Science FAQ covers the very basics of HD and introduces some ideas about why we need research to find treatments.

About HDBuzz

* Our HDBuzz FAQ and People Page explain what HDBuzz is, and the people behind it.
* And our Funding page explains where we get our money from and how we make sure HDBuzz is neutral and reliable.

The most promising possible treatments

Some of the world’s top scientists are working round the clock to develop treatments for Huntington’s disease - and real progress is being made. Dozens of possible treatments are being worked on, and every day a successful treatment gets one day closer. Here are some leading approaches being tested in the clinic.

Huntington’s disease therapeutics conference 2023 - Day 3

HDBuzz (English)

Welcome to the third and final day of HD science, live from Dubrovnik, Croatia!

Our Twitter updates are compiled below. Continue to follow live updates for the final day of the conference with the hashtag #HDTC2023.
Check out our coverage of Day 1 here: https://en.hdbuzz.net/343 and day 2 here: https://en.hdbuzz.net/344.

Biomarkers

This morning’s session will focus on biomarkers, things we can measure to get a picture of a person’s health or their response to a drug. Different types of biomarker measurements might focus on predicting onset, monitoring a person’s HD, or checking drug safety. As we heard last night, NfL levels can help us get a better picture of brain health, but there are other proteins also being studied for this purpose.

HD Clarity

United for change in Parliament

HDA - UK

DOUBLE your donations with the Big Give

HDA - UK

Mindful of Huntington's - what is this year's May awareness campaign about?

HDA - UK

Huntington’s disease therapeutics conference 2023 - Day 2

HDBuzz (English)

Welcome to the second full day of HD science, live from Dubrovnik! After yesterday’s amazing basic science talks, today begins with a session focused on companies developing new experimental treatments for HD.

Our Twitter updates are compiled below. Continue to follow live updates for the rest of the conference with the hashtag #HDTC2023.

Check out our coverage of Day 1 here: https://en.hdbuzz.net/343 . We’ll post summaries in article format for each day of the conference.

HD therapeutic candidates

A unique approach to ASOs