The Executive Committee is the body responsible for governing the European Huntington’s Disease Network (EHDN), directing and overseeing its activities and establishing its strategy.
The Committee meets monthly and endorses clinical trials, approves access to clinical data and biosamples from the Registry study, and approves seed fund applications twice per year. Its members are elected by majority vote of the EHDN membership for a term of four years.
January 24 they meet in Prague, Czech Republic.
February 1, the National Huntington’s Disease Meeting is taking place in Madrid, Spain.
Contact Asociación Corea de Huntington Española (ACHE) for more information:
WhatsApp: 623 02 22 36 | Website: www.e-huntington.es
February 2, the European Huntington Association board will meet in Spain.
The board consists of: Astri Arnesen (President), Barbara D’Alessio (Vice President), Filipa Jùlio (Secretary), Andre Willems (Treasurer), Dina De Sousa (Member at large), Svein Olaf Olsen (Member at large), Danuta Lis (Member at large) and Bea de Schepper (Liason officer).
The 15th Annual HD Therapeutics Conference will be held February 24-27, 2020, in Palm Springs, California. The conference program is currently being crafted and will cover all aspects of drug discovery related to Huntington’s disease.
Sessions will include:
- HD Genotype and Phenotype – CNS Profiling
- Potential Therapeutic Benefit of Modulating Somatic Instability
- The Path to Prevention
- HTT Lowering: Signals from the Clinic
- HTT Lowering: Exploring Distribution, Timing, and Safety (Loss of Function)
The conference will begin on Monday afternoon with a resource fair and end on Thursday evening after the farewell banquet. The final program will be distributed to all registrants closer to the time of the conference.
29 February 2020 will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.
Find events near you! | Get involved!
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.
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 884 rare disease patient organisations in 72 countries.
On March 17th, the French and Belgian Huntington Associations will organize a Colloquium based on the theme “Living in a Huntington Family” in Lille, France.
The event is a collaboration between the associations and the CHU Hospital of Lille, the Namur Hospital of Liège, and the genetic centre of Charleroi. Matt Ellison from Huntington’s Disease Youth Organization (HDYO) will cover the topic “How to talk to children in a Huntington Family”.
For more information contact Albert Counet, president of the Ligue Huntington Francophone Belge: albert.counet@skynet.be
The First Middle Eastern Conference on Huntington’s Disease will take place in Cairo, Egypt March 20-21!
Behind the conference is Shaimaa El-Jaafary (picture, 3rd from the left). Shaimaa currently works at the Department of Neurology, Cairo University. She’s been working hard to establish a Huntington’s Disease network for researchers and family members in the Middle East.
For more information, contact Shaimaa at shaimaa_jafary@kasralainy.edu.eg
The Huntington’s Disease Coalition for Patient Engagement (HD-COPE) will meet in March. It’s the 3rd meeting since the coalition was established in 2017.
After one year of planning, HD-COPE was launched in September 2017 by the European Huntington Association (EHA), Huntington’s Disease Society of America (HDSA) and Huntington Society of Canada (HSC).
The overall aim of the coalition is to be the voice of family members. They want to speak the patients’ needs and be a link between researchers and families. The HD-COPE team consists of people impacted by Huntington’s disease in one way or the other: as caregivers, at-risk, gene positive or negative.
In Toronto the team will discuss patient engagement, drug development and meet with pharmaceutical companies.
Learn more: HD-COPE’s second meeting
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.
In addition to the #LightItUp4HD campaign, events are taking place worldwide to raise awareness and break down stigma. 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.
Join awareness month by lighting up your home and share your photos on social media using #LightItUp4HD.
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 old from all over the world can attend the event. Anyone impacted by Huntington’s disease age 18-35 (this includes partners) can attend, if you live on planet Earth or if you are a professional who works in the Huntington community.
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.
The youth organization will have a scholarship fund open to help those who need funding to attend.
Go to the event website here: International Young Adults Conference
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
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.
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.
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.
Early registration deadline: March 16.
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.
Every second year European Huntington’s Disease Network (EHDN) hosts one of the world’s largest conferences dedicated solely to Huntington’s disease.
In 2020, the EHDN Plenary Meeting will take place in Bologna, Italy September 10-12.
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.