INFO & ADVICE

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Learn more about the impact of COVID-19 on Huntington families, research and trials, virtual events, in addition to general information about the coronavirus.
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MENTAL HEALTH

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Infectious disease outbreaks like COVID-19 can be worrying. This can affect your mental health. But there are many things you can do to take care of yourself.
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EXERCISE

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It is important you try to stay physically active. Exercising is good for your physical and mental health. Here are some tips on activities.
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SUPPORT
Developed by the Huntington's Disease Association of England & Wales

ARE PEOPLE WITH HUNTINGTON'S
AT A HIGHER RISK?

Huntington’s disease (HD) itself does not necessarily put you at a higher risk of getting COVID-19. However, people who are symptomatic may be in the “high-risk” category because of difficulties swallowing, clearing secretions from the lungs, and self-understanding of limitations. There may also be an increased risk of developing pneumonia as a result of being bedridden and undernourished. In general, individuals over age 60 are at the highest risk of developing a severe case of COVID-19.

To stay safe and healthy we should therefore take necessary precautions to protect ourselves and those around us. We highly recommend you to follow advice given by your local government, health institutions and WHO – this includes washing your hands regularly and maintain social distancing.  

If you are caring for someone affected by Huntington’s disease, please make sure you follow social distancing guidance and self-isolating guidance if you experience COVID-19 symptoms. If you have been traveling to a high-risk area lately, you should also avoid close contact with the Huntington patient for 14 days and consult a healthcare provider. Moreover, some HD patients at particularly high risk may need to isolate themselves even more strictly.

WHAT IS COVID-19?​

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COVID-19, short for coronavirus disease 2019, is a new illness that can affect your lungs and airways. It's caused by a virus called coronavirus. According to WHO, the most common symptoms of COVID-19 are:

Fever
Dry cough
Tiredness

THIS RESOURCE IS
SUPPORTED BY:

EVENTS
Join online events and webinars from the comfort of your own home

Dec
9
Wed
TWO-PART WEBINAR | What is mindfulness and how can it help?
Dec 9 @ 7:00 pm – 8:30 pm
TWO-PART WEBINAR | What is mindfulness and how can it help?

Free of charge | Open to everyone | Register in advance

If you are living with a lot of stress, it can be difficult to calm your mind. However, it is important to take care of yourself – especially if you are taking care of others as well.

In this webinar series, Mari Aanensen at Mindfulness Kristiansand will give an introduction to mindfulness; what it is, how it works, why it’s relevant for people from Huntington families and how you can get started.

The two sessions will include presentations, exercises and opportunities for reflection/dialogue. You will be invited to explore some simple mindfulness practices together with the other attendees. In addition, you will have the opportunity to continue practicing at home in between the two sessions.

Topics we will explore:
What is mindfulness
Research – what do we know
How mindfulness helps us cope with stress, worry and anxiety
The benefits of being kinder to ourselves
Simple ways to get started

WHEN? 2. & 9. December
/ 19:00 Central European Time
/ 18:00 in England, Portugal
/ 20:00 in Finland, Greece

REGISTRATION: REGISTER HERE!

Dec
16
Wed
WEBINAR | New Year Special: Summary of the year and looking ahead
Dec 16 @ 7:00 pm – 8:30 pm
WEBINAR | New Year Special: Summary of the year and looking ahead

Free of charge | Open to everyone | Register in advance

Despite Covid-19, a lot of progress have been made in Huntington’s disease research.

With the help of Prof. Anne Rosser, Dr. Ralf Reilmann and Alzbeta Mühlbäck, MD, we will summarise the biggest achievements in 2020 and make some predictions for 2021. Ask them your question and celebrate a new year together with us!

WHEN? 16. December
/ 19:00 Central European Time
/ 18:00 in England, Portugal
/ 20:00 in Finland, Greece

REGISTER HERE!

  • Ann Rosser is Professor of Clinical Neuroscience, Division of Psychological Medicine and Clinical Neurosciences. She’s also chair of the European Huntington’s Disease Network (EHDN).
  • Alzbeta Mühlbäck is a Medical Doctor by background specialised in neuropsychiatry. She’s head of a German Huntington’s disease clinic, Isar-Amper-Klinikum Klinik Taufkirchen, and a Executive Committee member of EHDN.
  • Ralf Reilmann is a Medical Doctor by background. He’s the Founding Director of the George Huntington Institut in Germany, devoted to clinical and preclinical research in Huntington’s disease. Reilmann is also a Executive Committee member of EHDN.

 

Feb
28
Sun
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’ lives.

WHY?
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

WHO?
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. 2021 is no exception.

Find information about the thousands of events happening around the world on the last day of February here.

Mar
13
Sat
VIRTUAL | HDYO’s International Young Adult Congress 2021
Mar 13 – Mar 14 all-day
VIRTUAL | HDYO’s International Young Adult Congress 2021 @ Strathclyde University Technology and Innovation Centre (TIC)

Free of charge | Primarily for 18-35 years-old

Join HDYO’s Virtual Congress for young adults aged 18-35 impacted by Huntington’s Disease!

For two days, insightful talks, sharing, research updates, peer support and fun will take place online! This event is aimed primarily at young adults aged 18-35 impacted by Huntington’s Disease from families around the world. However as the event is now virtual, HDYO are welcoming family members of all ages. It’s also for professionals and pharmaceutical industry partners who work with the Huntington community.

For more information, visit: www.hdyocongress2021.com

RECORDED WEBINARS

Did you miss any of our live webinars?
Watch them here.