Online Session: One Disease, Dozens of Stories

– Written by the Moving Forward Team on February 19th, 2024 

At the EHA conference 2023, which was held in Blankenberge (Belgium), we had the opportunity to hear the session about “The many faces of HD”. You can get an overview of this session in this short video:

That session was extremely impactful and interesting for all the conference attendees and the Spanish Moving Forward team wants to follow-up its steps. Therefore, the Moving Forward team is organizing a Zoom session, to be held on March 21st at 19:00 CET, in which, in an informal way, the Spanish-speaking HD community will hear different stories and personal experiences related to Huntington’s disease.

We would like this to be the first of many more sessions in 2024, in which we will have the chance to hear personal stories that can serve as inspiration and example to others. This meeting will give us an overview of the many faces of Huntington’s disease and an overall impression of the challenges of coping and living with the disease. We have invited one person in each of these different situations to share their story with us: 

  • A person at risk
  • A person with a genetic test result in the gray zone
  • A person with a positive test and in a premanifest HD stage
  • A person with manifest HD
  • A caregiver
  • A person with a negative test
  • An experienced professional dedicated to HD care

This will be a unique experience, as the meeting will NOT be recorded to ensure the privacy of all speakers and attendees, thus creating a comfortable space to get to know each other and exchange personal experiences in a safe environment. We hope that these real-life stories can reach as many people as possible, so please join us!

We look forward to seeing you on March 21st and sharing with you a unique experience.

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