The History

The idea of founding the European Huntington Association (EHA) came during the 6th International Huntington Association (IHA) conference in 1985.

The idea came out of two reasons. One was the necessity of a place where scientists could work out the research guidelines concerning tests on the location of the Huntington gene. These guidelines had to be universal and accepted worldwide. Second, several Europeans had expressed the wish to organize a meeting on a closer European level.

The Dutch Huntington Association offered to organize this sort of meeting in 1986. This marked the birth of the European Huntington Association. The main focus during the conference was to work out the research guidelines previously mentioned. Gerrit Dommerholt was elected president and Dick Bates vice president of the European Huntington Association.

Since 1986, an EHA meeting has taken place every other year. Here the board, president and vice president have been elected for a two year period.

In 2004 Beatrice De Schepper was elected president. She sat for twelve years until 2016. During that period De Schepper focused on a close collaboration with the European Huntington Disease’s Network (EHDN) since its start in 2003. The main focus of the European Association was further changed. The fundation of EHA’s had previously been research and the scientific aspects of Huntington’s Disease. Now it was decided that EHA’s main area should be Huntington families and affected. In addition, EHA started to support the founding of new local Huntington’s Disease associations all over Europe.

In 2016, Astri Arnesen took over the presidency. She launched the project Stronger Together, which aims to build a bridge between HD families and the research community. One way of doing this is to get scientists to hear the personal stories. The second way is to get HD affected more involved in research. This can be done by for instance participating in Enroll-HD.

From left to right: Christiane and Bea De Schepper . Two well known women in the HD community.
From left to right: Bernhard Landwehrmeyer, Astri Arnesen (president) and Bea De Schepper (former president). Honoring of Landwehrmeyer after he stepped down as chair for EHDN. A position he had taken on since the start of EHDN in 2003.