HealthE-RND
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.
PROJECT
HealthE-RND has 3 main parts:
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. Learn more.
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.
SECTIONS
FAMILY & PATIENT EXPERT PANEL (FPEP)
COORDINATORS
PARTNERS
WHY?
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.