We understand that the COVID-19 pandemic can cause a lot of strain, stress and isolation on Huntington’s disease (HD) families, patients and relatives. In order to support you in this situation, the European Huntington Association in collaboration with the European Reference Network for Rare Neurological Diseases are organizing a webinar on Zoom with a panel of people from the Huntington community.
We will have 14 speakers from the Huntington’s disease field being able to respond to questions and concerns in 18 languages.
The webinar will give you information about the specific risks for HD patients, update on consequences for the ongoing HD studies and trials, and some advice on how to cope with the new situation. In addition, to have an open Q&A session in English, the participants can chat (write) with an expert individually and private. In the individual chat, you can post your questions in your native language.
Topic: Huntington’s disease and the COVID-19 pandemic – a difficult combination
Date: Monday, April 6
Time: 4 – 5.30 pm CET
Join the webinar: https://zoom.us/j/284555212
(There is no need to sign up in advance to the webinar)
Confirmed speakers:
Astri Arnesen – European Huntington Association
Professor Bernhard Landwehrmeyer (Neurologist) – Germany
Alzbeta Muehlbaeck (Neuropsychiatrist ) – Germany/Slovakia
Professor Anne-Catherine Bahoud Levi (Neurologist) – France
Professor Hugh Rickards (Psychiatrist) – UK
Dr Yuri Seliverstov – Russia
Natalia Grigorova (Psychologist) – Bulgaria
Filipa Julio (Neuropsychologist) – Portugal
Dr Alzbeta Muehlbaeck (Neuropsychiatrist) – Germany
Professor Maria Judit Molnar (Neurogeneticist) – Hungary
Dr Jose Lopez Sendon (Neurologist) – Spain
Dr Lasse Philstrøm (Neurologist) – Norway
Ramona Moldova (Neuropsychologist ) – Romania
Dr Wioletta Krysa (Geneticist ) – Poland
Professor Ferdinando Squitieri (Neurologist) – Italy
Postponed
The European Huntington Association is holding a meeting on how to ensure drug access for all.
April 8-9 community leaders from Huntington’s disease associations will gather together in Amsterdam to make a strategic plan in relation to access to new drugs for all. During the meeting we will discuss how we as patient advocates can ensure access to treatment – regardless of where you live and your socioeconomic background.
With new treatment and drugs being developed, we believe this is an important aspect of patient advocacy.
Over the last years, May has been Huntington Disease Awareness Month. Starting off at the Huntington’s Society of Canada, Awareness Month and the #LightItUp4HD campaign has grown into a global movement.
During May, buildings, monuments and statues worldwide will be lit up in blue and purple. Blue to raise awareness of Huntington’s disease, purple of Juvenile Huntington’s.
Join awareness month by lighting up your home and share your photos on social media using #LightItUp4HD.
In addition to the #LightItUp4HD campaign, events are an important part of awareness month. May 2017, Pope Francis met 2000 people impacted by Huntington’s Disease in the Vatican. May 2019, the European Huntington Association kicked off Awareness Month with HD on the Bike.
UPDATE! Due to the Corona virus, the first International Young Adults Conference is postponed until March 12-14 2021. More information from Matt Ellison (HDYO).
Did you already book your ticket? Do you have any questions? Go to the event website or contact events@hdyo.org.
In 2020, the world’s 1st International Young Adults Conference for 18-35-year olds impacted by Huntington’s Disease will be held by the Huntington’s Disease Youth Organization (HDYO)!
This is the first conference of its kind. HDYO will be working with partners to ensure that many young adults from all over the world can attend the event. Anyone in the world impacted by Huntington’s disease aged 18-35 (this includes partners) can attend. Professionals who works in the Huntington community can also join the conference.
The organization hope to be able to host as many as 500 over a period of 3 days. This will be the largest gathering of young adults in the Huntington community.
HDYO will have a scholarship fund open to help those who need funding to attend.
Go to the event website here: International Young Adults Conference
UPDATE! Due to the Corona virus, the membership meeting will be held as a web meeting.
May 14, the EURODIS membership meeting and seminar for patient advocates in European Reference Networks, will take place in Stockholm, Sweden.
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 884 rare disease patient organisations in 72 countries.
European Reference Networks for rare diseases create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders.
Contact Martina Bergna for more information about the event: martina.bergna@eurordis.org
Postponed
The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.
The event draws together more than 800 participants from over 50 countries around the world. Leading, inspiring and engaging all stakeholders to take action, ECRD is where innovative solutions in the rare disease field are born. The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community – patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators.
People living with a rare disease have the right to reach their highest potential of well-being; join us in ECRD 2020 Stockholm to take part in discussions to inform and build the future ecosystem for rare disease policies and services.
UPDATE! Due to the Corona virus, the consortium meeting will be held as a web meeting.
Critical Path Institute (C-Path) is a nonprofit, public-private partnership with the Food and Drug Administration (FDA) created under the auspices of the FDA’s Critical Path Initiative program in 2005.
C-Path’s aim is to accelerate the pace and reduce the costs of medical product development through the creation of new data standards, measurement standards, and methods standards that aid in the scientific evaluation of the efficacy and safety of new therapies.
UPDATE! The 6th European Academy of Neurology Congress which was planned to take place in Paris on 23-26 May 2020 will move ONLINE and will be free of charge!
More information can be found here. European Academy of Neurology (EAN) are looking forward to seeing you at the virtual congress for lots of great talks and networking!
European Academy of Neurology (EAN) is a non-profit, independent organisation representing more than 45,000 members, as well as 47 European national societies. As a medical society EAN promote excellence in the practice of general neurology throughout Europe, leading to improved patient care.
The overarching theme of the congress is “Time for Action: Predict, Prevent, Repair”. The ‘red thread’ of the congress will show and demonstrate in many sessions with a rich spectrum of high-quality information the novel therapeutic interventions, designed to predict, protect and repair neurodegenerative diseases.
European Federation of Neurological Associations (EFNA) is an umbrella association representing pan-European neurology patient groups.
Their goal as an association is the following: ‘Empowering Patient Neurology Groups’. EFNA strive to add capacity to their members – allowing them to be the most effective advocates possible in their own disease specific areas.
EFNA currently has 19 member associations (the European Huntington Association being one of them). May 24-26 they will meet in Paris, France.
June 12, the European Huntington Association board will meet in Portugal. The Meeting will take place around the same time as Portugal’s official “Huntington Day” June 15.
The board from left to right:
Filipa Jùlio Secretary | Portugal
Svein Olaf Olsen Member at large | Norway
Danuta Lis Member at large | Poland
Dina De Sousa Member at large | Scotland
Astri Arnesen President | Norway
Bea de Schepper Liason officer | Belgium
Barbara D’Alessio Vice President | Italy
Andre Willems (Treasurer) is not present in the photo.
Every second year European Huntington’s Disease Network (EHDN) hosts one of the world’s largest conferences dedicated solely to Huntington’s disease (HD). In 2020, the EHDN Plenary Meeting will take place in Bologna, Italy September 10-12.
The Plenary Meeting is open to clinicians, scientists, EHA delegates and members of families affected by Huntingtons. You can learn more about recent advances in research and attendees have the opportunity to meet people in the field of HD studies in more informal settings.
Usually, EHDN members are entitled to have their travel and accommodation costs reimbursed up to a maximum of 400 EUR for travels within Europe and 600 EUR for travels from non-European countries. Costs above these amounts cannot be covered by the EHDN. Reimbursement forms need to be submitted after the Plenary Meeting.
Stay tuned for more information.
The European Huntington Association (EHA) Business Meeting is held every other year and is taking place around the same time as the EHDN Plenary Meeting. This year, the Business Meeting will take place on Sunday, September 13.
The Business Meeting is going to be held in the morning, so that it will be possible to leave Bologna in the evening.
During the Business Meeting, the EHA Board will present their work over the last two years. Participants will also have the opportunity learn more about Huntington’s disease, research and get to know others in the Huntington community. At the Business Meeting in 2018, new representatives from Greece and Gran Canaria attended. You can find a video from the last Meeting here.
The Business Meeting is open to members of the European Huntington Association. Usually, each member association have one or two representatives at the meeting.
For more information, contact info@eurohuntington.org.
We look forward to meeting you in Bologna!
Due to the corona virus, the International Young Adult Congress had to be postponed from 9 May 2020 until 9 March 2021. HDYO is still extremely excited for Congress in 2021 and hope that everyone who was planning to attend in 2020 will be able to attend in March 2021.
The conference will take place in Glasgow, Scotland and HDYO are committed to keep their “star-studded line up and making it an amazing experience for all”.
For more information, visit: www.hdyocongress.org