HealthE-RND is a 3-year pilot project carried out in six European countries: Czech Republic, Germany, Italy, Ireland, the Netherlands and United Kingdom. Our overarching aim is to improve quality of life amongst those of us affected by rare diseases by offering an online eHealth platform. In the initial phase of the project we are focusing on Huntington’s disease families and patients. Learn more.
HealthE-RND has 3 main parts:
Rare diseases require specialised medical services. However, there is a lack of resources in many European countries. People affected by rare diseases therefore sometimes have to travel far to get help. By offering online services we might be able to reduce differences in access to help and increase general level of treatment, guidance and care.
We are therefore working with: 1) Developing a questionnaire measuring quality of life amongst those of us affected by rare diseases, and 2) Developing an eHealth platform enabling online guidance.
During the pilot project period of 3 years, we will develop an online platform for Huntington’s disease patients and families. Moreover, we will study whether the eHealth solution is beneficial and improves quality of life.