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

Sep
18
Fri
ONLINE | First Huntington Meeting in Iceland!
Sep 18 @ 3:00 pm – 6:00 pm
ONLINE | First Huntington Meeting in Iceland! @ ONLINE

Free of charge | Online | 15:00 in Reykjavik 

Welcome to the first ever Huntington meeting in Iceland.

The meeting will take place online through the platform Zoom, as well as in Reykjavik. For more details, contact Vigdís Stefánsdóttir here, who’s responsible for the meeting.

REGISTER HERE!

Sep
24
Thu
ONLINE | Swedish National Huntington Meeting
Sep 24 @ 11:00 am – 3:30 pm
ONLINE | Swedish National Huntington Meeting @ ONLINE

Free of charge | Open to everyone who understands Swedish (Swedes, Norwegians, Danes +) | 11:00 CEST

From Riksförbundet Huntingtons sjukdom:

Vi kommer att sända på vår hemsida www.huntington.se

Gör så här:

Klicka på nedanstående länk så kommer ni direkt in på vår hemsida och till det Nationella mötet, där hittar ni vårt program och mer information, just nu ser ni en testbild den kommer att ändras till sändning torsdag 24/9 kl 11.00 vi kommer att ha en kortare lunchpaus 12.10-12.40

Välkommen till Nationellt möte 2020

Vad behöver jag göra själv?

När du klickar på startknappen några minuter innan 11.00 så kommer det upp en ruta där du fyller i din mailadress och därefter även ditt namn, därefter kommer du in i sändningen. Om ni stöter på problem maila till info@huntington.se  eller skicka ett sms till 0709-500702 så skall vi försöka att guida er.

Vi hoppas att vi ses

Hälsningar Styrelsen Riksförbundet Huntingtons sjukdom

Sep
29
Tue
WEBINAR | How Can We Develop and Implement Evidence Based Rehabilitation in Rare Disorders?
Sep 29 @ 3:00 pm – 4:00 pm
WEBINAR | How Can We Develop and Implement Evidence Based Rehabilitation in Rare Disorders?

Free of charge | Open to everyone | 15:00 CEST

Speaker: Hortensia Gimeno

Gimeno is Clinical Research Fellow at NIHR and PhD Candidate at King’s College London and Consultant Occupational Therapist at Guy’s and St Thomas’ NHS Foundation Trust.

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This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Oct
8
Thu
WEBINAR | Oral Care & Huntington’s: Keeping the mouth healthy
Oct 8 @ 11:00 am – 12:30 pm
WEBINAR | Oral Care & Huntington's: Keeping the mouth healthy @ ONLINE

Free of charge | Open to everyone | Online

Together with the Huntington´s Disease Association of Cyprus and Annette Carlsson, we’re running a webinar on how to maintain a healthy mouth and strong teeth in people with Huntington’s disease.

During the webinar we will discuss how to manage oral health and demonstrate several tools that will make oral care easier in daily life. It is free of charge and open to everyone (both professionals and family members/carers).

Background:

One of the corner stones for Quality of Life is good oral health. For people with Huntington’s there are many problems that affects the oral health. Dry mouth as well as blisters and sores can cause pain and difficulties in eating, speaking and to perform oral care.  Toothache and lack of teeth affects even the mental status. Swallowing difficulties increase the risk of aspiration. It is of extra importance to maintain a good oral health and thereby minimize the risk of injurious bacteria reaching the lungs. 

Speaker: Annette Carlsson

Annette is a Dental hygienist at the Mun-H-Center and Hospital dentistry in Göteborg, Sweden. She’s also a board member of the Swedish Huntington Association.

___________

WHEN: 8. October, 11:00-12:30 CEST
PLATFORM: Zoom 
REGISTRATION: REGISTER HERE

 

Oct
13
Tue
WEBINAR | Diagnostic Algorithm for Childhood Onset Chorea
Oct 13 @ 3:00 pm – 4:00 pm
WEBINAR | Diagnostic Algorithm for Childhood Onset Chorea

Free of charge | Open to everyone | 15:00 CEST

Chorea denotes movement disorders. The term is derived from the Ancient Greek “choreia” meaning “dance”. The most common inherited cause of chorea is Huntington’s disease, which formerly was called Huntington’s chorea. However, it was renamed because of the many important, non-movement features characterising the disease.

Speaker: Juan Dario Ortigoza-Escobar

Ortigoza-Escobar is a pediatric neurologist from the Hospital Sant Joan de Déu in Barcelona, Spain. He is specialised in movement disorders such as dystonia, Parkinsonisms, chorea, tremors, myoclonias, tics/Tourette syndrome and deep brain stimulation.

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This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Oct
20
Tue
WEBINAR | Recommendations for Physical Therapy for Huntington’s disease
Oct 20 @ 3:00 pm – 4:00 pm
WEBINAR | Recommendations for Physical Therapy for Huntington’s disease

Free of charge | Open to everyone | 15:00 CEST

Speaker: Bernhard Landwehrmeyer

If you have attended any Huntington’s disease conference, congress or seminar, you have probably seen Bernhard Landwehrmeyer there. He is one of the founders of the European Huntington’s Disease Network (EHDN). Since 2011, Landwehrmeyer is the Principal Investigator of Enroll-HD, a worldwide, observational Huntington disease study for Huntington families. He also directs the Huntington’s disease center at Ulm, a center providing genetic counselling, as well as rehabilitation for Huntington affected families along with basic and translational science.

SIGN UP HERE!

This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Dec
1
Tue
WEBINAR | Functional Movement Disorders: a Diagnostic Guide
Dec 1 @ 3:00 pm – 4:00 pm
WEBINAR | Functional Movement Disorders: a Diagnostic Guide

Free of charge | Open to everyone | 15:00 CET

Speaker: Christos Ganos

Ganos is a neurologist and senior lecturer at the Movement Disorders and Neuromodulation Unit at the Charité, University Medicine in Berlin. His clinical and research focus is on movement and neurodegenerative disorders.

SIGN UP HERE!

This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).