We caught up with Chief Executive Cath Stanley about her recent visit to the EHDN Conference.
What is the EHDN?
"The EHDN is the European Huntington’s Disease Network, a network of clinicians, researchers, professionals allied to medicine, and lay organisations. The network's idea is to provide opportunities to share experience and expertise and good practice. It also provides a central place for people to hear about clinical trials and how to participate in them. The conference takes place once every two years. Essentially, it serves as a key network for bringing together Huntington's disease research and support efforts throughout Europe and around the world."
Why do you attend?
"A few representatives from the charity attended the conference. Many are part of European working groups that are developing best practices for treating Huntington's disease. Attending the conference gives the charity the opportunity to hear firsthand updates on clinical trials and good practices. It also provides the opportunity to network with others, share expertise and knowledge, and discover new developments that could benefit our community."
Who attends the conference?
"Clinicians, researchers, professionals allied to medicine, pharmaceutical companies, family members and lay organisations such as ourselves attend the conference. Everyone there is motivated by one goal - to improve life for people with Huntington's disease."
What was the conference about?
"The conference offered a range of insightful sessions, highlighting the progress of ongoing clinical trials and exploring future research possibilities. It also delved into different approaches to Huntington’s disease research, providing attendees with a comprehensive view of current methods. The keynote address tied everything together, giving a broad overview of the advancements made in the field and the direction in which research is heading."
How do you feel about potential treatments for Huntington's disease?
"While there is still no cure, it’s encouraging to see the variety of innovative research approaches being explored. There is such a huge amount of research happening using different methods that I feel it's right that we are optimistic about potential forthcoming treatments."
What were your main takeaways from the conference?
"The amount of research is truly promising, with trials exploring various methods, which offers hope in tackling Huntington’s disease from different perspectives. There’s a growing emphasis on preventing the onset of Huntington’s disease or treating it as early as possible, which is encouraging. However, to move forward effectively, developing robust biomarkers is essential. While there are challenges ahead, the direction of current research feels promising, and the commitment to progress is clear."
What were your standout moments from the conference?
"The sense of positivity and community! The HDYO Ambassadors' roundtable discussion was particularly inspiring. Hearing young people voice their perspectives on what they want pharmaceutical companies to understand was a powerful reminder of why we’re all here."
Below are some photos from the event:
