Between the Sessions at the EHDN 2022 Conference in Bologna, we all had the opportunity to see the amazing posters designed by the different Associations, universities and professionals with very different themes around Huntington’s disease.
The European Huntington Association was really impressed by the hard work of the patient organizations and had the chance to speak with some of them to know more about their posters and projects.
Here are the full videos with their poster presentations:
This poster is called “Peer support for the huntington’s community …by the huntington’s community“, designed by the Huntington’s victoria Chief Executive Officer, Tammy Gardner.
The objective of this project is to develop a national peer-lead model of capacity building for people impacted by HD through implementation of the peer support web-based interface, “Huntington’s community connect (HCC)”. To provide a mechanism to deliver up-to-date, high quality information for people impacted by HD.
This poster is called “The Swedish lay organization, RHS, aproaches target groups in a creative way by using their webpages in practical nursing guidance”, designed by The Swedish Huntington Associaton team.
The objective of this training is to access valuable knowledge about Huntington’s Disease. The target group are nursing homes for people with HD, homes-based personal assistance services, Centre for daily activities and rehabilitation. This training is available in English here.
This poster is called “Let Us Talk: A Communication Skills Training Course for Russian Healthcare Professionals Working with Huntington’s Disease”, and was presented by Filipa Júlio
Moving Forward, in collaboration with the EHA, created the “Let Us Talk” experimental web-based communication skills training course to educate healthcare professionals on ways to effectively communicate and relate to HD patients and families. This course was thought to affect the quality of the care provided and, consequently, improve the quality of life of everyone involved.
Moreover, it was thought to facilitate the research participation of the Russian HD community.
We also talked with Idaira Rodríguez, a Health Economist at the HCD Economic. She presented a poster called “Caregiver Burden: Evidence from The Huntington’s Disease Burden of Illness (HDBOI) Study for Europe”, made in collaboration with UniQure and the University of Chester.
This research provides a detailed profile of informal or non-professional caregivers and explores the impact of HD on caregiver’s HRQoL using data from the European participants of the Huntington’s Disease Burden of Illness (HDBOI) study.