The 1st of December a meeting took place between the European Huntington Association and the management of the European Huntington’s Disease Network. The basis for the meeting was the EHA project Stronger Together. The two organizations discussed how they could extend their collaboration and work coordinated together. 

Representatives from the European Huntington Association (EHA) were the board members Astri Arnesen, Barbara d’Alessio and Danuta Lis. In the beautiful city of Rome they met with the European Huntington’s Disease Network (EHDN) management to discuss the project Stronger Together and further collaboration.

From left: Barbara d`Alessio and Danuta Lis from EHA, Tim Mclean, Selene Capodarca, Ruth Fullam, Jamie Levey from EHDN

From left to right: Barbara d`Alessio and Danuta Lis from EHA, Tim Mclean, Selene Capodarca, Ruth Fullam, Jamie Levey from EHDN

The EHDN is a nonprofit research network committed to advancing research, facilitating the conduct of clinical trials, and improving clinical care in HD.

The project Stronger Together aims to join forces to speed up recruitment to Enroll-HD and clinical trials. Enroll-HD is a worldwide observational study for Huntington’s disease families. It will monitor how the disease appears and changes over time in different people. Anybody who carries the gene, is at risk or is a spouse/partner (not blood related) of a person with a family history of HD can participate in the study.

“The meeting was very constructive and inspiring,” says Astri Arnesen the President of EHA. She looks forward to the work that lies ahead of the two organizations. She is confident that the collaboration will result in a larger involvement of HD families. Further, the organizations want to improve the quality of every part in the Enroll-HD process.

I ask Arnesen what the next step for Stronger Together is. She replies: “The next step is to identify countries where we can run a pilot collaboration and gain experiences on how things work when we put ideas into practise”.

 

If you want to learn more about Stronger Together, you can read about the project here.

 

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