News

This HD clinical trial will explore the safety, tolerability, and efficacy signals in 26 total patients with early manifest HD. “We are very pleased with the progress that we continue to make in this Phase 1-2 clinical trial and that we are now administering AMT-130 at the higher dose,” said Ricardo Dolmetsch, Ph.D., president of research  at uniQure.

Full article here

You are kindly invited to join the 1st Huntington’s Disease Meeting for the Arabic Countries, organised by the International Huntington Association 🧡This is the first in a series of educational events dealing with Huntington’s Disease and will take place via Zoom.

Register here for free

Scientists identify precisely how pridopidine works in models of Huntington’s disease.

Pridopidine is a drug developed to treat Huntington’s disease (HD) and now scientists have a clearer understanding of how it works in the body and brain.

Read the full article here

Positive for Huntington's - Yusuf Jamal Din story

The هنتنغتون بالعربى – Huntington’s Disease Arabia is a new initiative that has seen an incredible uptake from people across the region. It serves as a bridge between Arabic audiences and authoritative HD information.

Full Facebook post here

All four Huntington’s disease charities across the UK and Ireland are working together to raise awareness of the impact of Huntington’s disease, not just on individuals but on families too.

Explore the Living History wall

It’s time to make neurology a global public health priority
and the OneNeurology Initiative is aiming to do just that.

More info here

Watch part 1 – Adriano

Watch part 2 – Dimitri

Meet Adriando and Dimitri, two HD family members who raised money for Huntington’s Disease while walking and biking through the world.

Improving access to care and treatment for Huntington’s Disease patients and families

See our petition and sign here 

Today, only a minority of people affected by HD get the support and help they need.  But there are solutions to this problem – expertise and knowledge exists – we only need to provide better access to all patients. 

Life with HD comes in many flavours - alice wexler

Watch the full video here

During the webinar Annette

Listen to what the well known HD family member, academic and patient advocate from the US,  Alice Wechsler,  has to say about what life with HD can be like. 

Watch the full video here

In this Webinar, Vissia Viglietta will be speaking on behalf of WAVE. She would explain the results and all the good work they have been doing in improving from the updated on PRECISION-HD1 and PRECISION-HD2 medical trials. 

Watch the full video here

During this Webinar, Lauren Boak will be speaking about the preliminary analysis they have done of the data so far and what the next steps will be.

Watch the full video here

During the webinar Annette will talk more about how to manage oral health and demonstrate several tools that will make oral care easier in daily life. 

Join our Light
it up 4 HD!

How to take action:

  1. Light your house with purple or blue
  2. Take a picture
  3. Upload it on social media and add #LIGHTITUP4HD
  4. Tag us! @TheEuroHuntington

As you all remember in March the independent Data Monitoring Committee advised Roche to halt dosing of the drug Tominersen.   On April 27 Scott Schobel, Medical Director & Clinical Science Leader at Roche shared the interim analyses of the results from the Generation HD1 at the CHDI therapeutics conference.

During the Awareness month we are organizing several webinars, articles and multiple ways to include everyone into our activities. Try our Facebook Frame for the May month!

News about the results from Generation HD1

Results from Generation HD1As you all remember in March the independent Data Monitoring Committee advised Roche to halt dosing of …
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Wave Life Sciences: setback for Huntington’s disease trials

30. March 2021. Yesterday, Wave Life Sciences gave an update on PRECISION-HD1 and PRECISION-HD2. Due to disappointing results, the biotechnology …
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WEBINAR | Speak About It: How talking can be a way to cope

In this first webinar of Speak About It, Jeanne Gravfort will talk about her own method: Free Your Mind. Learn …
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WEBINAR | Improving Care for Rare Disease Patients in Europe

Rare Disease Day is taking place in February. The European Reference Network for Rare Neurological Diseases is therefore hosting a …
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DNA Repair: Hot Topic in Huntington’s Research

DNA damage repair has become a hot topic in Huntington’s research. By targeting proteins involved in the repair process we …
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LIRH Conference: Current Treatment Perspectives for Huntington Disease

The Italian League for Research on Huntington Disease (LIRH) hosted their annual conference in December 2020. Watch a recording of their …
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The Inherited Shame (Video!)

Thorvald Steen did not know he had an uncle with the same disease as him. In this interview, he talks …
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Simple, Brief Summary of Ongoing Drug Development

A number of researchers are using a wide range of approaches to develop new treatments for Huntington’s disease. Here is …
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VIRTUAL | New Year’s Eve Worldwide Wish to Cure Huntington’s

Jimmy Pollard is inviting you to join his virtual event: New Year’s Eve Worldwide Wish to Cure Huntington’s Disease! Make …
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