Category: Events

WEBINAR | Speak About It: How talking can be a way to cope

22nd January 2021

In this first webinar of Speak About It, Jeanne Gravfort will talk about her own method: Free Your Mind. Learn more about how talking about challenges can help you cope with Huntington’s disease. Later on, you will have the opportunity to register for a course to learn more about the approach. WEBINAR:In this first webinar the 3rd of February you will get an introduction to Free Your Mind. In this webinar you will learn more about how talking…
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WEBINAR | Improving Care for Rare Disease Patients in Europe

21st January 2021

Rare Disease Day is taking place in February. The European Reference Network for Rare Neurological Diseases is therefore hosting a webinar on how to improve care for rare disease patients the 23rd of February. Free of charge | Open to everyone In this webinar, we will be discussing care of rare disease patients in Europe,…
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LIRH Conference: Current Treatment Perspectives for Huntington Disease

12th January 2021

The Italian League for Research on Huntington Disease (LIRH) hosted their annual conference in December 2020. Watch a recording of their online meeting below (in English) and get an introduction to ongoing and upcoming therapeutic studies in Huntington’s disease.

VIRTUAL | New Year’s Eve Worldwide Wish to Cure Huntington’s

28th December 2020

Jimmy Pollard is inviting you to join his virtual event: New Year’s Eve Worldwide Wish to Cure Huntington’s Disease! Make a wish or just listen to others from around the world.  On New Year’s Eve, 31st of December, from 20:00 to 02:00 Central European Time, you are invited to join the virtual event New Year’s Eve Worldwide Wish to Cure Huntington’s Disease on zoom! The event…
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Merry Christmas!

24th December 2020

To all of you: Merry Christmas from the European Huntington Association! This has been a strange and different year. For many of us, it has been difficult. The world we knew changed: uncertainty, social distance, lockdown, and isolation. Families were not allowed to visit loved ones in care homes, children could not go to school, meet…
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The Inherited Shame: Coping with disease (video!)

21st December 2020

In Part II of “The Inherited Shame”, Thorvald Steen talks about how to cope with having a genetic disease: how important it was to open up to close friends and how he was able to see his own strengths instead of limitations. When Thorvald Steen got diagnosed with facioscapulohumeral muscular dystrophy at the age of…
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The Inherited Shame: Finding out about disease (video!)

18th December 2020

We are proud to launch Part I in our interview series with the Norwegian author Thorvald Steen! In Part I of “The Inherited Shame”, the author talks about when he first found out about having inherited a genetic disease: Facioscapulohumeral. Thorvald Steen was born in 1954, in Oslo, Norway. He grew up with his mother…
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WEBINAR | Summary of the year and looking ahead

16th December 2020

Join our last webinar in 2020! Together with Prof. Anne Rosser, Dr. Ralf Reilmann and Dr. Alzbeta Mühlbäck we will take a look at recent achievements in drug development and make some predictions for 2021! WHEN? 16. December (Today) 19:00 Central European Time20:00 Portugal, England18:00 Finland, Greece More information and registration here.

Virtual Meeting on How to Improve Access to Care for Huntington Families (Video!)

15th December 2020

The 3rd of December representatives from different European institutions and organisations discussed how to ensure better access to care, services and treatment for all people affected by Huntington’s Disease. Together with the European Federation of Neurological Associations (EFNA) the European Huntington Association (EHA) hosted a Multi-Stakeholder Virtual Roundtable two weeks ago. The meeting was led by Donna Walsh,…
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Adriano is walking 1000 km to raise awareness of Huntington’s Disease

8th December 2020

Adriano Meireles is 28 years old and at risk for Huntington’s disease. To raise awareness and funds for the Portuguese association, Associação Portuguesa Dos Doentes De Huntington, he decided to walk across Portugal. – Why did you embark on this journey?  – This adventure started because I found out on the last couple of years that…
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Events
Feb
28
Sun
all-day JOIN RARE DISEASE DAY 2021!
JOIN RARE DISEASE DAY 2021!
Feb 28 all-day
JOIN RARE DISEASE DAY 2021!
From rarediseaseday.org WHAT? Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’…
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