Improve Quality of Life.
Our aim is to develop an eHealth platform to improve quality of life
in individuals affected by rare diseases and their families.
Less Constrained by Location.
Care teams for rare diseases are few. People therefore sometimes have to travel far. By providing online practices, access to help is not depending on location.
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WHAT IS OUR GOAL?

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Our aim is to develop an eHealth platform to improve quality of life in individuals affected by rare diseases. By offering online help we might be able to achieve our aspiration: that everyone should have access to guidance and care.
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WHAT WE DO

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HealthE-RND is a pilot project. Over 3 years we aim at developing an eHealth platform and a quality of life questionnaire. To study whether the platform is useful, we are focusing on Huntington's Disease (HD). Medical centres and people affected by HD in six European countries are therefore participating in the project.
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HealthE-RND IS CARRIED OUT IN 3 STEPS

1. HD-Needs

In HD-Needs we are working on developing a questionnaire to measure overall quality of life in people affected by Huntington's disease (HD) and their companions.

2. HD-eHelp

In HD-eHelp we are developing a digital platform. Here, people and families affected by Huntington's disease (HD) will get access to guidance and help online.

3. HD-Proof

In HD-Proof we will measure whether online help is beneficial for people. At this stage, we will evaluate the impact by using our quality of life questionnaire.

HealthE-RND is funded by the EU Joint Programme – Neurodegenerative Disease Research (JPNDR). It is a European collaboration between partners from Czech Republic, Germany, Ireland, Italy, the Netherlands and the United Kingdom.
Additional funders: