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H46 The uncertainty of waiting: assessing the impact of the first Spanish meeting for premanifest and potential carriers of Huntington’s disease
  1. Filipa Júlio1,2,
  2. Astri Arnesen1,3,
  3. Ruth Blanco1,4,
  4. Beatrice De Schepper1,5,
  5. Dina De Sousa1,6,
  6. Danuta Lis1,7,
  7. Svein Olaf Olsen1,3,
  8. Giorgos Papantoniou1,8,
  9. Saija Ristolainen-Kotimäki1,9,
  10. on behalf of the European Huntington Association (EHA)
  1. 1European Huntington Association, Belgium
  2. 2Associação Portuguesa dos Doentes de Huntington, Portugal
  3. 3Landsforeningen for Huntingtons Sykdom, Norway
  4. 4Asociación Corea de Huntington Española, Spain
  5. 5Huntington Liga, Belgium
  6. 6Scottish Huntington’s Association, UK
  7. 7Polskie Stowarzyszenie Choroby Huntingtona, Poland
  8. 8Huntington’s Disease Association of Cyprus, Cyprus
  9. 9Suomen Huntington Yhdistys RY, Finland

Abstract

Background The European Huntington Association (EHA) promoted the first event in Spain dedicated to premanifest and potential carriers of Huntington’s Disease (HD). 52 individuals converged in Madrid for a national meeting entitled ‘The Uncertainty of Waiting’, which included a presentation about the EHA Moving Forward project, a debate about genetic testing moderated by a neuropsychologist, group dynamics and a get-together with snacks and drinks.

Aims This work aimed to assess the meeting impact through the participants’ feedback.

Methods The EHA created an online survey to learn about the participants’ impressions of the meeting. The participants’ expectations towards HD organizations were also collected. The survey included open-ended and closed-ended questions and response percentages were analysed.

Results There were 34 survey respondents, 68% women, 44% under 35 years. Importantly, while 74% of respondents attended an HD meeting for the first time, 79% considered it very interesting and useful (particularly the debate) and 94% expressed interest in joining future HD-related events. HD research (79%) and coping strategies (76%) were signalled as preferred topics for upcoming meetings. Interestingly, most attendees reported their wish to get information (85%) and psychological support (79%) from HD associations.

Conclusions This meeting was a crucial entrance door for Spanish premanifest and potential HD carriers to connect with their peers and engage with local associations and healthcare professionals. The informal, non-clinical approach seems to be effective in getting these specific groups closer to information and support. Additionally, this event generated relevant topics to address in actions tailored to these groups.

  • Premanifest HD
  • At Risk for HD
  • Genetic Testing
  • Survey
  • HD Associations

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