The European Huntington Association is very happy to invite you to to join the HD community at the upcoming conference in Blankenberge, Belgium from 19-22nd of October.  The conference is open to everyone who lives with HD in their family or is interested in HD as a healthcare professional, friend, relative or volunteer. 

We will offer opportunities to learn about HD care and treatment and how to cope living with HD.  The organiser will also offer a variety of social and physical activities.  This will be the best place to get to know new people, learn and enjoy being part of a community.  So many of us feel alone dealing with the disease.  Only together can we fight isolation and stigma

The Conference location will be at Corsendonk Duinse Polders Hotel, A. Ruzettelaan 195, 8370 Blankenberge (Belgium). 

These quiet and beautiful surroundings offer the best opportunities for a warm, including and nice experience.

Travel to Blankenberge

Kindly note that conference registration fees do not cover accommodation expenses. You are responsible for booking your own accomodation for the conference days. The Corsendonk Duinse Polders Hotel (Conference venue) is now fully booked. But don’t worry, there are many other options for accommodation nearby.

We are proud to share all the details about the EHA Conference Agenda and the speakers in every session and activity. Here you can see all the speakers and the session description.

Friday October 20th

Session 8:00 – 9:00

Rudy Vera

Activity Host
Rudy is caring for his wife with late stage HD. He is a physical activity enthusiast and has done several HD on the move activities with us in previous conferences.
Learn more about the session

Official Welcome and Greetings

Session 9:00 – 9:20

André Willems

Host
President of the Huntington Liga
Learn more about the session

Astri Arnesen

Host
Astri grew up in an HD family as her mother developed the disease throughout her adolescence. She has several family members affected by HD. In 2010 she tested negative for the HD gene. She has been involved in the HD community since the early 1980s. She got engaged in the EHA in 2010 and was elected President in 2016, a position she still holds.
Learn more about the session

Albert Counet

Host
President of the Ligue Huntington Francophone Belge
Learn more about the session

Hilde Crevits

Minister of Health in Flanders
Hilde is the Minister of Health in Flanders
Learn more about the session

30 Years from the gene discovery. How far have we come?

Session 9:20 – 9:50

Astri Arnesen

Host
Astri grew up in an HD family as her mother developed the disease throughout her adolescence. She has several family members affected by HD. In 2010 she tested negative for the HD gene. She has been involved in the HD community since the early 1980s. She got engaged in the EHA in 2010 and was elected President in 2016, a position she still holds.
Learn more about the session

Session 10:00 – 11:15

Svein Olaf Olsen

Host
Svein Olaf is an HD family member. He is a board member of EHA and President for the Internation Huntington Association. When he met his wife she was at-risk for HD. They got 2 children.
Learn more about the session

Being at-risk

Session: The many faces of HD

Bruce Wilson

Speaker
Bruce is young IT guy from Scotland. He is at-risk for HD. He is active in the HD community in Scotland and internationally through his engagement in HDYO and HD-CAB.
Learn more about the session

Being HD gene positive

Session: The many faces of HD

Rob Haselberg

Speaker
Rob is a scientist and currently works for a small biotech company in the Netherlands. He tested positive for HD several years ago. Rob is very active in the HD community in the Netherlands as well as in EHA where he is a board member.
Learn more about the session

Being HD gene negative

Session: The many faces of HD

Saija Ristolainen- Kotimäki

Speaker
Saija is working for a patient organisation in Finland. Some years ago she tested negative for HD. Saija is very active in the HD community as President of the Finnish HD association and board member of EHA.
Learn more about the session

Having HD symptoms

Session: The many faces of HD

Tess Persson

Speaker
Tess lives in Sweden and has early stage HD. She is active in the HD community both in Sweden and internationally through her engagement in HDYO and HD-CAB.
Learn more about the session

Care for someone with HD

Session: The many faces of HD

Javier Lafuente

Speaker
Carmen Fernandez has HD and is dependent on a lot of support and help. Her husband Javier is active in the HD community in Spain and share their journey together on social media.
Learn more about the session

The Importance of Communication in HD Care

Session 11:15 – 13:00

Ruth Venhuizen MD, PhD

Host
Ruth is a physician in a nursing home and researcher in Huntington’s disease. I work in the specialized nursing home in Apeldoorn, The Netherlands and in Amsterdam university medical center.

Saija Ristolainen- Kotimäki

Host
Saija is working for a patient organisation in Finland. Some years ago she tested negative for HD. Saija is very active in the HD community as President of the Finnish HD association and board member of EHA.

Session: The Importance of Communication in HD Care

Session: The Importance of Communication in HD Care

Alex Fisher

Moderator
Specialist Occupational Therapist (OT). Alex was awarded the 1 st Clinical Excellence Award by the Huntington’s Disease (HD) Association in 2022 which she describes as “an honour beyond words”.
Learn more about the session

Jacqueline Grootscholten

Moderator
Jacqueline have been working as a counselor for people with disabilities for 33 years. From the age of 45, I started as a coach for children growing up in a Huntington’s family. I do this from my experience. I myself grew up in a family with Huntington's disease. From this, I know and understand the children of today.
Learn more about the session

Parallel sessions

Alzbeta Muehlbaeck

Host
Alzbetha is a medical doctor specialized in genetics and psychiatry. She has been working with HD patients and families for many years at the clinics in Taufkirchen and Ulm.
Learn more about the session

Rob Haselberg

Co-host
Rob is a scientist and currently works for a small biotech company in the Netherlands. He tested positive for HD several years ago. Rob is very active in the HD community in the Netherlands as well as in EHA where he is a board member.
Learn more about the session

Have children at-risk

Session: Being an HD family member and having babies

Svein Olaf Olsen

Moderator
Svein Olaf is an HD family member. He is a board member of EHA and President for the Internation Huntington Association. When he met his wife she was at-risk for HD. They got 2 children.

Not having children

Session: Being an HD family member and having babies

Michaela Winkelmann

Moderator
Michaela is the German Huntington Association (DDH) President

Which solutions do we find?

Session: Being an HD family member and having babies

Despina Anastasiou

Moderator
Despina is the Vice President of the Huntington's Disease Association of Cyprus. She works as an HR Manager for one of the biggest handler of container terminal companies in Europe. Her family is affected by Huntington's Disease and, since finding out, it has become a mission for me to support the HD community in my country.

Session 14:00 – 15:30

Dr. Dirk Liessens

Host
Dirk is a psychiatrist and cognitive and behavioral psychotherapist. Head of the department ‘psycho-neurological rehabilitation’ in Zorggroep St. Kamillus in Bierbeek, Belgium. Doctor, responsible for the Huntington convention in Flanders.
Learn more about the session

Giorgos Papantoniou

Host
Giorgos is an HD family member from Cyprus. He is an archaeologist and works at Trinity University Dublin. Giorgos is active in the HD community and EHA board member.
Learn more about the session

Why complicated?
Because it is!

Session: As HD progress – difficult decisions

Dr. Dirk Liessens

Host
Dirk is a psychiatrist and cognitive and behavioral psychotherapist. Head of the department ‘psycho-neurological rehabilitation’ in Zorggroep St. Kamillus in Bierbeek, Belgium. Doctor, responsible for the Huntington convention in Flanders.
Learn more about the session

Making the impossible possible and it's limits

Session: As HD progress – difficult decisions

Bart Corthals

Moderator
Bart is the Director of Home Marjorie, working with people with Huntington's Disease since 1999. Before that Bart worked with people with mental disabilities.
Learn more about the session

A long and winding road, the client as our compass

Session: As HD progress – difficult decisions

Saskia Demeulenaere

Moderator
Saskia is a psychologist in Home Marjorie since 1999. She provides support for clients and their network, and she is responsible for the totality of care provided by Home Marjorie. Saskia also function as a coach for the teams working with the clients in daily life.
Learn more about the session

Self-care and social activities

Session 17:00 – 19:00

Andri Christoudia

Activity Host
Andri is living with a chronic and rare condition and can relate to the everyday difficulties that family members affected by a disease like HD, encounter. She is a psychologist and specialized in systemic psychotherapy and couples therapy.
Learn more about the session

Football cup

Session 17:00 – 18:00

Svein Olaf Olsen

Activity Host
Svein Olaf is an HD family member. He is a board member of EHA and President for the Internation Huntington Association. When he met his wife she was at-risk for HD. They got 2 children.

Session 18:00 – 19:00

Session 18:00 – 19:00

Photography activity "Abandonment"

Session 18:00 – 19:00

Olivia Sawano

Activity Host
Olivia is a German musician and the person behind the Huntington song “North Star – HD8890”.
Learn more about the session

Marlies Brandt

Activity Host
Marlies is a registered Music Therapist, working with patients with Huntington’s disease since June 1993. Developed the intervention Songwriting for patients with HD. Works at Atlant in the Netherlands.
Learn about the session

Francesco Ripanti

Activity Host
Francesco Archaeology at the University of Siena and completed my PhD at the University of Pisa. After a one-year experience as a postdoctoral fellow at the Cyprus University of Technology, I joined Trinity College Dublin in June 2022.
Learn more about the session

Debriefing Sessions (Individual Consultations)

Session 17:00 – 19:00

Alzbeta Muehlbaeck

Host
Alzbetha is a medical doctor specialized in genetics and psychiatry. She has been working with HD patients and families for many years at the clinics in Taufkirchen and Ulm.
Learn more about it

Filipa Júlio

Filipa has a BSc in Clinical and Health Psychology and a PhD in Neuropsychology.
Learn more about it

Andrada Ciuca

Andrada is a genetic counsellor and postdoc researcher at Babeș-Bolyai University, Romania.
Learn more about it

Conference dinner

20:00

Saturday October 21th

Session 8:00 – 9:00

Rudy Vera

Activity Host
Rudy is caring for his wife with late stage HD. He is a physical activity enthusiast and has done several HD on the move activities with us in previous conferences.
Learn more about the session

Physiotheraphy EHDN Working Group

Session 9:00 – 13:00

Multidisciplinary treatment and care EHDN working group

Session 9:00 – 13:00

Norwegian HD Network

Session 9:00 – 13:00

Huntington Liga HD day for families

Session 9:00 – 16:10

Support groups for family members

Being Gene-postive

Session 11:00 – 13:00

Rob Haselberg

Moderator
Rob is a scientist and currently works for a small biotech company in the Netherlands. He tested positive for HD several years ago. Rob is very active in the HD community in the Netherlands as well as in EHA where he is a board member.
Learn more about the session

Being Gene–negative

Session 11:00 – 13:00

Saija Ristolainen- Kotimäki

Moderator
Saija is working for a patient organisation in Finland. Some years ago she tested negative for HD. Saija is very active in the HD community as President of the Finnish HD association and board member of EHA.
Learn more about the session

Giorgos Papantoniou

Moderator
Giorgos is an HD family member from Cyprus. He is an archaeologist and works at Trinity University Dublin. Giorgos is active in the HD community and EHA board member.
Learn more about the session

Being At -risk

Session 11:00 – 13:00

Astri Arnesen

Moderator
Astri grew up in an HD family as her mother developed the disease throughout her adolescence. She has several family members affected by HD. In 2010 she tested negative for the HD gene. She has been involved in the HD community since the early 1980s. She got engaged in the EHA in 2010 and was elected President in 2016, a position she still holds.
Learn more about the session

Claudia Villa

Moderator
Claudia is an HD family member involved in Huntington’s Onlus. She also became an HDYO Ambassador in 2021.
Learn more about the session

Being a Spouse/ partner/ carer

Session 11:00 – 13:00

Svein Olaf Olsen

Moderator
Svein Olaf is an HD family member. He is a board member of EHA and President for the Internation Huntington Association. When he met his wife she was at-risk for HD. They got 2 children.
Learn more about the session

What are the needs of the younger generations affected by HD and how can we best support them? The Moving Forward Project

Session 14:00 – 15:15

Filipa Júlio

Host
Filipa is the Project Manager in Moving Forward. She is also an EHA board member
Learn more about the session

Ruth Blanco

Speaker
Ruth is the president of the Spanish Huntington Association (ACHE), and the Spanish coordinator for the Moving Forward project.
Learn more about the session

Zaynab Umakhanova

Speaker
Zaynab is the Russian coordinator for the Moving Forward Project
Learn more about the session

Julie Skarberg

Speaker
Julie is the Norwegian coordinator for the Moving Forward project
Learn more about the session

Olivier Graf

Speaker
Olivier is the Communication and Project Manager at Ligue Huntington Francophone Belge
Learn more about the session

Luis Aguilar

Speaker
Luis will present his book, called 'Chronicle of a Fortune Foretold,' which narrates his story of coping with Huntington's Disease.
Learn more about the session

Online training for care givers

Session 15:15 – 16:00

Carina Hvalstedt

Host
Carina works in the Swedish Huntington Association, and she is the project manager for the online training.
Learn more about the session

John Gregor

Host
John works at the Huntington Disease Association
Learn more about the session

Self-care and social activities

Session 17:00 – 19:00

Andri Christoudia

Activity Host
Andri is living with a chronic and rare condition and can relate to the everyday difficulties that family members affected by a disease like HD, encounter. She is a psychologist and specialized in systemic psychotherapy and couples therapy.
Learn more about the session

Football cup

Session 17:00 – 18:30

Svein Olaf Olsen

Activity Host
Svein Olaf is an HD family member. He is a board member of EHA and President for the Internation Huntington Association. When he met his wife she was at-risk for HD. They got 2 children.

Documentary from France: Jusqu'en haut avec lui

Session 17:00 – 19:00

Charline Pouillet

Activity Host
Charline and Theo created an association called 'On détonne contre Huntington'.
Learn more about the session

Qigong

Session 17:00 – 18:00

Sylvie Daubian-Delisle

Activity Host
Sylvie is a qi gong teacher and a certified coach. She offers qi gong workshops and has also developed « adapted and sitting qi gong » for persons with reduced mobility
Learn more about the session

Qigong

Session 18:15 – 19:15

Sylvie Daubian-Delisle

Activity Host
Sylvie is a qi gong teacher and a certified coach. She offers qi gong workshops and has also developed « adapted and sitting qi gong » for persons with reduced mobility
Learn more about the session

Choir rehearsal for the song North Star

Session 18:00 – 19:00

Olivia Sawano

Activity Host
Olivia is a German musician and the person behind the Huntington song “North Star – HD8890”.
Learn more about the session

Session 18:00 – 19:00

Marlies Brandt

Activity Host
Marlies is a registered Music Therapist, working with patients with Huntington’s disease since June 1993. Developed the intervention Songwriting for patients with HD. Works at Atlant in the Netherlands.
Learn about the session

Photography activity "Abandonment"

Session 18:00 – 19:00

Francesco Ripanti

Activity Host
Francesco Archaeology at the University of Siena and completed my PhD at the University of Pisa. After a one-year experience as a postdoctoral fellow at the Cyprus University of Technology, I joined Trinity College Dublin in June 2022.
Learn more about the session

Debriefing Sessions (Individual Consultations)

Session 17:00 – 19:00

Alzbeta Muehlbaeck

Host
Alzbetha is a medical doctor specialized in genetics and psychiatry. She has been working with HD patients and families for many years at the clinics in Taufkirchen and Ulm.
Learn more about it

Filipa Júlio

Filipa has a BSc in Clinical and Health Psychology and a PhD in Neuropsychology.
Learn more about it

Andrada Ciuca

Andrada is a genetic counsellor and postdoc researcher at Babeș-Bolyai University, Romania.
Learn more about it

Farewell dinner and party

20:00

Sunday October 22Nd

Session 8:00 – 9:00

Rudy Vera

Activity Host
Rudy is caring for his wife with late stage HD. He is a physical activity enthusiast and has done several HD on the move activities with us in previous conferences.
Learn more about the session

Clinical trial updates with discussion and Q&A

Session 9:00 – 11:00

Trial recruitment in ongoing and upcoming HD trials

Session 11:00 – 12:00

Astri Arnesen

Host
Astri grew up in an HD family as her mother developed the disease throughout her adolescence. She has several family members affected by HD. In 2010 she tested negative for the HD gene. She has been involved in the HD community since the early 1980s. She got engaged in the European Huntington Association in 2010 and was elected President in 2016, a position she still holds.

HD on the Move

Meet up at the front door of the conference venue and Rudy will lead the way through the beautiful landscape in Blankenberge. Bring comfortable shoes and clothes. No pressure to keep a high pace or go for a long distance. You can adapt to whatever level you want and are comfortable with. The important thing is to be active together and enjoy the fresh air and nice nature.

Activity host: Rudy Vera

Official Welcome and Greetings

Astri Arnesen, President European Huntington Association, Andrè Willems, President Huntington Liga and Albert Counet, President Ligue Huntington Francophone Belge will welcome us all to Belgium and tell a bit about HD in Belgium and the role of the associations.

30 Years from the Gene Discovery: How far have we come?

In 1993 the gene mutation causing Huntington’s Disease was identified.  This was a major breakthrough in HD research and we all thought it would lead to the development of treatments relatively fast.  Still we don’t have medicines approved but there has been made major steps forward.  Where has the gene discovery lead us in terms of research, clinical care and how has it impacted HD family members?

Host: Astri Arnesen

The many faces of HD

Each HD family member has a unique experience and journey. How does it influence your life?

Host: Svein Olaf Olsen

Speakers: Bruce Wilson, Rob Haselberg, Saija Ristolainen- Kotimäki, Tess Persson and Javier Lafuente

Meet me with understanding

Session: The Importance of Communication in HD Care

Both family members and health care professionals encounter challenges in communicating with patients. Kierkegaard stated: In order truly to help someone else, I must understand more than he–but certainly first and foremost understand what he understands. In this session we want to explore how HD influence your ability to understand and how the helper can adapt.

Speaker: Alex Fisher

Speak with me and not just to me or above me!

Session: The Importance of Communication in HD Care

Communication is a challenge in most HD families. Many parents struggle to talk with their children about the disease and how it impacts family relations. This situation often leads to an increase in the burden. Instead of supporting each other, we tend to struggle with things in isolation. We know that children who experience being involved and informed cope better.

Speaker: Jacqueline Grootscholten

Being an HD family member and having babies

In this session we will have people tell about the choices they made in relation to have children. As HD is a hereditary disease it brings a lot of uncertainty on how and whether next generation will be affected. The gene discovery and medical
progress has provided us with several options to have children free of the HD gene. But is it a simple solution? Which attitudes and perceptions guide us when
making decisions?

Host: Alzbetha Muehlbaeck

As HD progress – difficult desicions

Why complicated? Because it is!”

During life, members of a Huntington family may have to make quite some difficult decisions from a very young age: do I want to know, what kind of relationships are permitted, can I have a normal job, when and who to ask for help, psychiatry or psychology. And once symptoms of the disease are prominent, when to stop working, driving, how to live a full life?

Decisions are difficult because they often symbolize the loss of possibilities and the burden of the disease. But also personality characteristics, coping strengths, traumas, sexuality and life experiences play an important role. And features of the disease itself. Perspectives differ, from those involved and the family members, from the care givers and the professionals to employees and society. The endpoint differs, from trying to preserve wellbeing as much as possible to minimizing the risks for incidents as carefully as possible.

All factors taken into account, most decisions are indeed complicated most of the time.         

Host: Dr. Dirk Liessens

Making the impossible possible and it's limits

In Home Marjorie we try to make the impossible possible for clients. Quality of life for clients and their families is our primary goal.  Still managing an organisation requires keeping a balance between the interests of the clients, the employees and the organisation as a whole. Protecting this balance sometimes also implies making difficult decisions that have an effect on the clients. 

To keep everyone on board, it is important to continuously have an open dialogue between clients and families, employees and management and to be transparent about goals, limits and resources. We also see that not everybody has access to the same care, not in Belgium and definitely not across countries. Not having access to appropriate and affordable care limits the amount of decisions the person can make for himself.

Host: Bart Corthals

A long and winding road, the client as our compass

A person with HD faces a lot of difficult decisions throughout life. He will also have progressive difficulty in expressing his views and decisions.  As care workers we strive to hear the client’s voice, however quiet, and let it be our compass. Difficult decisions regarding moving to housing, using a wheelchair, adaptations to meals, independence, medical care, etc. require continuous effort to communicate. 

It is also important to accept the gradualness of the decision-making process. When the client gets sicker, the role of close family members may become the role of a representative. They will also face difficult decisions. As care workers we stand beside them to help shoulder the burden. Sometimes care workers have to guide the client and be their compass because they are lost. It is a continuous search for the balance between following the client and knowing when to take his hand and carefully switching from one position to the other.

Host: Saskia Demeulenaere

Psychotherapy role play

Systemic Sculpture is an experiential Group Therapy technique. It is addressed to those wishing to acquire other perspectives as well as new dynamics for solving issues, through re-experience, self-revelation and sharing. Group participants, with the help of the therapist and other participants, reconstruct their own personal stories, creating new scenarios for their present and future. Traumas associated with present difficulties are re-embodied, with the aim of further understanding and healing. Following this experiential method, participants are usually left with the feeling of empowerment and emotional and/or practical movement from dead-end situations.

Activity host: Andri Christoudia

Choir rehearsal for the song North Star

North Star is the HD community’s own song. We learned about it at the EHA conference in Bucharest in 2019. Singing is good for your body and mind and here you will get the chance to sing with peers and enjoy the power of music and
song.

Activity host: Olivia Sawano

Interactive Music Therapy

Songwriting enables patients to express thoughts and feelings about their life and share them with caretakers and loved-ones. (I will bring a few songbooks which were published in 2006 containing a selection of 25 songs written with patients during music therapy sessions). Music therapy focusses on behavioural problems, cognitive functions, grieve, loss, emotional distress related to suffering from an incurable hereditary disease. In some cases I give music therapy to a family. Sharing music and emotions, reliving positive memories and enabling family members to experience and share pivotal moments.

Activity host: Marlies Brandt

Photography activity "Abandonment"

Buildings, landscapes, and objects that were once valuable goods are abandoned to time. Even more shocking is human abandonment, where individuals abandon themselves and their people or are abandoned by them. The photography activity “Abandonment” is based on conversations around selected photos with archaeological content and aims to engage participants with the concept of abandonment.

Host: Francesco Ripanti

Debriefing Sessions (Individual Consultatoins)

Do you want to talk about and process things that have been brought up in you during the conference? With HD on the agenda, you may encounter troublesome emotions and would like to have someone to talk to.  We offer the opportunity to have an individual session with a mental health professional to help you better deal with all the emotions related to HD and better process the emotional reactions raised by the conference topics.

Alzbeta Mühlbäck, Andrada Ciuca and Filipa Júlio will be available to hear you.

Support groups for family members

In the support groups you have the opportunity to exchange experience and thoughts with other family members in the same situation.  If you don’t want to share you are welcome to just sit down and listen and learn from others.  We divide the groups based on what relation you have to HD – being at-risk, being gene positive (but pre-symptomatic), being gene-negative, having symptoms of HD,  being a partner/spouse to a person affected by HD

The groups will be moderated by family members with a lot of lived experience with the same relation to HD as you. 

What are the needs of the younger generations affected by HD and how can we best support them?

This session will dwell on the needs of people at risk for HD and people with premanifest HD in the context of the Moving Forward project.  
The Moving Forward team will present the background and main goals of the project, describe some of the actions implemented in specific countries and introduce some of the plans for the near future.

Speakers: Filipa Júlio, Ruth Blanco, Zaynab Umakhanova, Julie Skarberg and Olivier Graf

Online training for caregivers

The Swedish Huntington Association has over several years developed an online training for professional carers.  They also managed to get financial support to translate one of the training modules into English.  The Huntington`s Disease Association for England and Wales has used the training in collaboration with several care homes.  In this session you will get insights in the online training and learn about the experiences the associations has drawn from using it.

Host: Carina Hvalstedt, John Gregor

Documentary from France: Jusqu'en haut avec lui

Charline, Théo and their father Olivier live in a small village in Normandy, Saint Pierre-en-Auge in Calvados.  After Mont-Blanc, crossing Europe by bike, Caen-Paris on foot in 48 hours… They tackle Kilimanjaro, a mythical African mountain culminating at 5,895 meters above sea level. 

Once they arrive there, everything does not go as planned. Kilimanjaro promises to be more difficult than expected, as the season is not conducive to climbing. The group becomes more united and prepares to climb together and overcome altitude sickness. At 6000 meters, the human body is deprived of oxygen and organisms do not all react in the same way. Huntington’s disease significantly weakens patients. Will Olivier make it to the end?

Charline Pouillet, Vincent Puybaret

Qigong

Qigong is a traditional Chinese psycho-corporal activity of well-being and preservation of health. This activity is accessible for everybody regardless of age and physical condition as long as we pay attention to our body, its needs and its limits. Qi gong allows you to reconnect the body and the mind, and to relax while strengthening your flexibility and your vitality.

With conscious breathing and a set of gentle and fluid exercises, qi gong offers an increase in tone and energy while promoting letting go and access to inner peace

Host: Sylvie Daubian-Delisle