COVID-19 IMPACT ON RESEARCH & TRIALS​

While researchers may not be going into lab every day, they’re still hard at work to combat this disease. They may not be doing experiments at the bench, but they’re reading papers to develop their next idea, compiling data to better understand HD, and writing papers to disseminate what they’ve learned to the world. The labs may be quieter, but HD researchers are still hard at work in their fight against HD.

With many countries’ entire healthcare systems turned over to providing care for people with COVID illness, and many doctors and nurses diverted from research into frontline care, an impact on Huntington’s disease clinical trials is inevitable. However, all those involved are doing everything they can to minimize the impact and carry on with whatever trial activity they can.

In practice, the impact will vary quite a bit from one site to another, and from one trial to another. Some sites may still be enrolling new patients, while many will be forced to pause recruitment of new participants and focus on continued care and dosing of patients already involved. Many sites will likely convert onsite trial visits into telephone calls, or postpone visits until it is safer to carry them out in person.

Decisions about what activity can carry on are largely determined locally, by the hospitals and local and national governing bodies that direct healthcare resources. Trial sponsors (companies like Wave, Roche and UniQure) fund, support and organize the trials. So far, all the trial sponsors we’ve heard from have indicated that they continue to be committed to running and completing the trials despite the interruption the viral pandemic may cause. Learn more at www.HDBuzz.net. 

COVID-19

Information from WHO

Coronavirus disease (COVID-19) is an infectious disease caused by a newly discovered coronavirus.

Most people infected with the COVID-19 virus will experience mild to moderate respiratory illness and recover without requiring special treatment.  Older people, and those with underlying medical problems like cardiovascular disease, diabetes, chronic respiratory disease, and cancer are more likely to develop serious illness.

The best way to prevent and slow down transmission is be well informed about the COVID-19 virus, the disease it causes and how it spreads. Protect yourself and others from infection by washing your hands or using an alcohol based rub frequently and not touching your face. 

The COVID-19 virus spreads primarily through droplets of saliva or discharge from the nose when an infected person coughs or sneezes, so it’s important that you also practice respiratory etiquette (for example, by coughing into a flexed elbow).

At this time, there are no specific vaccines or treatments for COVID-19. However, there are many ongoing clinical trials evaluating potential treatments. WHO will continue to provide updated information as soon as clinical findings become available.

Stay informed:

To prevent infection and to slow transmission of COVID-19, do the following:

  • Wash your hands regularly with soap and water, or clean them with alcohol-based hand rub.
  • Maintain at least 1 metre distance between you and people coughing or sneezing.
  • Avoid touching your face.
  • Cover your mouth and nose when coughing or sneezing.
  • Stay home if you feel unwell.
  • Refrain from smoking and other activities that weaken the lungs.
  • Practice physical distancing by avoiding unnecessary travel and staying away from large groups of people.

COVID-19 affects different people in different ways. Most infected people will develop mild to moderate illness and recover without hospitalization.

Most common symptoms:

  • fever.
  • dry cough.
  • tiredness.

Less common symptoms:

  • aches and pains.
  • sore throat.
  • diarrhoea.
  • conjunctivitis.
  • headache.
  • loss of taste or smell.
  • a rash on skin, or discolouration of fingers or toes.

Serious symptoms:

  • difficulty breathing or shortness of breath.
  • chest pain or pressure.
  • loss of speech or movement.

Seek immediate medical attention if you have serious symptoms.  Always call before visiting your doctor or health facility. 

People with mild symptoms who are otherwise healthy should manage their symptoms at home. 

On average it takes 5–6 days from when someone is infected with the virus for symptoms to show, however it can take up to 14 days. 

COVID-19 IMPACT ON PEOPLE AFFECTED BY HUNTINGTON'S

In Italy, Scotland and Belgium the impact of COVID-19 have been studied. Isolation, concerns, pressure, but also closeness to beloved ones and support. Learn more about how Huntington families are affected and why support is so important. 

READ ARTICLE HERE.

Families

>>
In Italy, LIRH studied change in overall comfort amongst family members and the effect of providing assistance.
Results

Young People

>>
The Scottish Huntington's Association studied the impact of COVID-19 on young people living with Huntington's.
Results

Care Home Residents

>>
The care home, Home Marjorie, studied well-being amongst their residents in Belgium.
Results

VIRTUAL EVENTS
There are many things you can join from the comfort of your own home

EVERY TUESDAY
Virtual Hangout

by HDYO (Huntington’s Disease Youth Organisation)

Every Tuesday 
13:00 CET
Follow HDYO on social media for links to events

ONCE A MONTH
eHuntington Café (Italian)

by NOI

16:00 CET
Contact NOI for more information at info@lirh.it

Feb
3
Wed
WEBINAR | Free Your Mind: Set Your Life Story Free Through Conversation
Feb 3 @ 7:00 pm – 8:30 pm
WEBINAR | Free Your Mind: Set Your Life Story Free Through Conversation

Free of charge | Open to everyone

In this first webinar of Free Your Mind, Jeanne Gravfort will talk about the approach and how you can use it as a way to better understand yourself and those around you. Later on, you will have the opportunity to register for a course to learn more about the approach (more information below).

WHEN?
Wednesday, 3rd of February 
19:00 Central European Time
18:00 in Portugal, England
20:00 in Finland, Greece

REGISTER HERE!

__________________

What is Free Your Mind?
Free your mind is an approach where you share your thoughts, feelings and experiences with people who live with the same life conditions as you. By talking and listening to others you get the possibility of being free – being able to understand your life story in a new and different way. It is an opportunity to join a community by telling your own story. A place where you can be a complete person in spite of your difference from others.

Having a Rare Disease
As a person affected by a rare disease you may experience life giving you many challenges that can seem overwhelming. You may live your life feeling sad that you are not able to do the things you want to do. You might be frustrated about the fact that you cannot live out your expectations for yourself and your life. You might feel lonely and everyday life might seem hopeless.

What is it about?
In Free your mind you will share your thoughts, feelings and experiences with people who live with the same life conditions as you. By talking and listening to others you will get the possibility of being free – being able to understand your life story in a new and different way.

Our starting point is an existential theme that every participant talks about taking turns. You will talk from your own life experiences without interruptions or questions from the other participants. Free your mind offers a safe space of confidentiality. A space where there are no taboo topics, no requirements or expectations.

Who’s Jeanne?
Jeanne Gravfort is a pastor with a lot of experience in the rare disease field. Through her studies and work, Jeanne has worked with theories of identity and memory in times of mourning and crisis and through trauma research. Furthermore, she has a specified education in mourning of the soul. Finally, Jeanne has counseled parents of handicapped children and she is a theological consultant at the Rare Disease Helpline in Denmark.

__________________

COURSE:

The European Huntington Association offers a course in the spring of 2021 – maybe it’s something for you? It is free of charge, but you have to be a member of a local Huntington’s disease association. If you are interested in joining the course after the first webinar – here are some practical information:

  • One group consists of 4-5 participants
  • We will meet a total of six times every other week
  • The aim of the course is that you will be able to run your own support groups using the Free your mind method.

 

Feb
23
Tue
Improving care for rare disease patients in Europe (Rare Disease Day Webinar)
Feb 23 @ 3:00 pm – 4:00 pm
Improving care for rare disease patients in Europe (Rare Disease Day Webinar)

Free of charge | Open to everyone

In this webinar, we will be discussing care of rare disease patients in Europe, focusing on rare neurological diseases, and providing different perspectives: from the clinician to the patient’s perspective and from a European level to a more local one with examples from France, Germany and Hungary.

The webinar will start with short presentations by the speakers followed by a discussion.

SPEAKERS:

  • Holm Graessner, coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND)
  • Donna Walsh, executive director of the European Federation of Neurological Associations (EFNA)
  • Sophie Bernichtein, project manager of BRAIN-TEAM in France
  • Tobias Mentzel, patient advocate at ELA Germany
  • Maria Judit Molnar, Professor of Neurology and director of Semmelweis University’s Institute of Genomic Medicine and Rare Disorders, Hungary

WHEN?
Tuesday, 23 of February 
15:00 Central European Time
14:00 in Portugal, England
16:00 in Finland, Greece

SIGN UP HERE.

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

May
5
Wed
WEBINAR | Oral Care & Huntington’s: Keeping the mouth healthy
May 5 @ 7:00 pm – 8:30 pm
WEBINAR | Oral Care & Huntington’s: Keeping the mouth healthy

Free of charge | Open to everyone | Online

Together with 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 Annette will talk more about 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 the chairperson of the Swedish Huntington Association.

___________

WHEN: 5. May, 19:00-20:30 Central European Time
PLATFORM: Zoom 
Registration will follow soon

Jun
19
Sat
VIRTUAL | European Academy of Neurology Congress
Jun 19 @ 8:00 am – Jun 22 @ 8:00 pm
VIRTUAL | European Academy of Neurology Congress @ ONLINE

The European Academy of Neurology (EAN) is hosting their 7th Congress in June 2021. This years theme: Towards Precision Neurology.

From Claudio L. Bassetti, EAN President:

“As the number of lives affected by the COVID-19 pandemic has now reached the millions, the health and safety of our congress attendees, our patients and our families, remains our primary concern.

While we may come from different nations, we are all experiencing difficult and trying times, and we must continue to work together to slow the spread of the disease.

With this situation in mind, the European Academy of Neurology has decided to go virtual again for the 7th EAN Congress on June 19-22, 2021, originally to be held in Vienna.

Once again, we look forward to offering you the opportunity to learn from experts in your field, grow your professional network, and discover the latest best practices in neurology, all in the comfort of your home. Building on our experience from the EAN Virtual Congress 2020, we will utilise the very best technical solutions to provide you with a virtual experience as comfortable and rewarding as the real thing.

In order to make participation affordable for colleagues all over the world, EAN is offering reduced fees for the virtual congress.

Please find detailed information on the EAN Congress Website.”

 

Registration is now open! 
Cost per ticket depends on whether you are a EAN member or not and your membership (student, researcher, etc.).

PROGRAMME

RECORDED WEBINARS

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