Evelyn Grimberg, EHC Co-Opted Steering Committee Member
The Netherlands

Evelyn Grimberg has the rare bleeding disorder Glanzmann’s Thrombasthenia. In her childhood, she has bleeding disorder problems, like bruising, nose bleeds and dental issues. During her puberty, she had to deal with a lot of menstrual bleeding issues. She began to realize how her bleeding disorder did affect her life.

Since 2005 she became active as a volunteer at the Dutch haemophilia Society. She has been in the society’s youth committee for nine years, including two years as the committee’s chair. As a member of the committee, she was committed to bringing the needs of people with rare bleeding disorders to attention. By telling her story she became recognised as a counsel for this special group, especially for women. After her work at the youth committee, she set up a women’s committee in the Netherlands. She also became International involved in the topic. She spoke at several (inter)national congresses. In 2016, she was part of the European project group on women and bleeding disorders. In 2018, she became a committee member of the European women’s committee which she became chair of in 2021.

In her daily life, she works at the Dutch Open Air Museum as a relationship manager for private donators and sponsors.