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EHDN Conference

October 22, 2018

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


Not only did I have the opportunity to attend my first ever EHDN Conference, but I also spoke in two different sessions; Everyday Life as an HD Gene Carrier and Debate Session about Confidentiality in Huntington’s Disease. I didn’t really know what to expect since I heard it happens every two years in Europe and is one of the largest HD gatherings in the world. It was definitely different compared to the HD conferences I have been to in the past, but I definitely learned a lot both as a speaker and an attendee.

Seth at EHDN

Here is what I learned:

  • Young people from all over Europe and Asia do not have the same support and resources as those in the US. In fact, I met some who still have to hide HD in their family or country because of the stigma behind the disease.
  • HDYO participated in many sessions included our staff or board members as speakers.
  • We need to continue to get to areas around the world who need our support while also connecting them with other young people going through similar challenges
  • Young people’s voices are being heard more and more at these conferences. Not only did Matt and I speak at different sessions, but other young people spoke as well. We need to always include young people’s voices since they are the future leaders of the HD community!

I had the chance to share my journey in the ‘Everyday Life as an HD Gene Carrier’ session while learning about other attendees’ stories and how HD impacted their life. But what got my excited the most was my ‘boy band’ mic I got to wear during the Debate Session about Confidentiality in Huntington’s Disease since I didn’t get the chance to wear one during my TEDx talk.

But in all seriousness, I am hear as another young person impacted by HD who wants to help others by connecting them to the proper resources and support that HDYO provides. Don’t hesitate to reach out to connect or if you need help figuring out ways to get more involved in the HD community!


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