Earlier this month, the Moving Forward team conducted a highly appreciated webinar on “Navigating the System – Legal Rights and Support for Neurodegenerative Diseases” together with the Swedish Huntington’s Disease Association and the Ytan project.

A total of 33 people participated, and the engagement was high throughout the session.

The webinar was moderated by Katarina Holmsten from the Swedish Huntington’s Disease Association together with Maria Linné, coordinator of the Moving Forward project in Sweden. The aim was to provide guidance and practical tools to families and professionals trying to find their way in an often complex and difficult to navigate system.

A lawyer, a counsellor from an HD team and two young family members participated and generously shared both professional knowledge and personal experiences.

Maja Mulaomerovic, a lawyer, gave concrete and valuable advice, including on power of attorney for the future – what it is, when it might be relevant and how useful it can be. Having a power of attorney can be crucial in securing a loved one’s rights and enabling smoother decision-making when the disease affects the individual’s ability to manage their daily life.

Anna Lindfors, a counsellor working at the HD team in the hospital of Gothenburg, gave a clear overview of the different support services available and addressed the importance of having the courage to seek help at an early stage in order to navigate the healthcare and social support systems.

The young family members shared their experiences of supporting a sick parent and the struggle it often means to get the right support.

Participants were very engaged in the chat, with many questions and sharing their own experiences. It was clear that the topic was touching and that the need for knowledge, sharing  and concrete tools is great.

The webinar was an important reminder that no one should have to stand alone in the fight for proper care, support and rights.

You can watch Maja Mulaomerovic and Anna Lindfors presentations here: