HD Focus: News Across the Globe

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

Junta-te ao nosso Concurso de Fotografia “Juntos somos mais fortes!”

Associação Portuguesa dos Doentes de Huntington

Podes ganhar uma inscrição gratuita na Conferência EHA 2023 na Bélgica! A European Huntington Association e a International Huntington Association organizaram um concurso de fotografia durante o #MayAwarenessMonth2023 para uma nova e criativa maneira de aumentar a consciencialização para a Doença de Huntington. Falamos sempre da importância da comunidade global de DH e porque é …

Junta-te ao nosso Concurso de Fotografia “Juntos somos mais fortes!” Read More »

Palestra – Investigação na Doença de Huntington: Presente e Futuro

Associação Portuguesa dos Doentes de Huntington

No próximo dia 27 de maio 2023 pelas 10h decorrerá via Zoom uma palestra com o tema “Investigação na Doença de Huntington: Presente e Futuro” pela Enfermeira Sandra Pires. A Sandra é enfermeira há 13 anos, licenciada na Escola Superior de Saúde de Castelo Branco (Portugal). Enquanto trabalhou em Portugal em contexto de unidade de …

Palestra – Investigação na Doença de Huntington: Presente e Futuro Read More »

Huntington’s disease therapeutics conference 2023 - Day 1

HDBuzz (English)

Hello from Dubrovnik, Croatia, where the 2023 CHDI Therapeutics Conference will be taking place from Monday, April 24th, through Thursday, April 27th!

This conference is a big one for HD researchers worldwide, from industry, academia, and nonprofit. Dozens of scientists will give talks on all things HD, from genetics, to therapeutics, to clinical trial news.

The HDBuzz Editorial team will be on the scene starting on the morning of Tuesday, April 24th, live-tweeting scientific talks and updates on the progress of clinical trials. Our Twitter updates are compiled below. Continue to follow live updates for the rest of the conference with the hashtag #HDTC2023.

For a summary of last year’s conference, start here: https://en.hdbuzz.net/320 We’ll post summaries in article format for each day of the conference.

Knowing what we need to know

PROOF-HD study of pridopidine ends with negative result

HDBuzz (English)

Top line results of the PROOF-HD study, run by Prilenia Therapeutics and testing pridopidine, have been announced at the American Academy of Neurology convention. Sadly the trial outcome was negative. We recap the history of pridopidine in Huntington’s disease, review the trial results, and figure out where this disappointing result leaves us.

The drug: pridopidine

Pridopidine has been under investigation as a possible treatment for Huntington’s disease since the early 2000s and has a long and colourful history. It was initially developed by the Swedish company Neurosearch who called it Huntexil.

Neurosearch thought pridopidine was able to stabilise levels of dopamine, which is important for movement control. They hoped it might therefore suppress involuntary movements and improve voluntary movements. They ran two trials called MermaiHD and HART, but the drug did not show conclusive benefits for movement control.

In 2012, Teva Pharmaceuticals purchased the right to develop pridopidine, and ran a third study called PRIDE-HD which tested several different doses of pridopidine, again with the aim of improving movement function.

An update on Proof HD

HDA - UK

Guarantee our essentials - a united call for action

HDA - UK

Invite your MP - Parliament reception

HDA - UK

Emergency alert on mobile phones

HDA - UK