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Doubly rare: Evelyn Grimberg and Minette van der Ven

Steve Chaplin

Steve Chaplin

Haemnet, UK
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Chaplin, Steve
  
17 avr. 2019
Doubly rare: Evelyn Grimberg and Minette van der Ven's Cover Image
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Catégorie d'article: Community Focus
Publié en ligne: 17 avr. 2019
Pages: s15 - s19
DOI: https://doi.org/10.17225/jhp00130
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© 2019 Steve Chaplin, published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
Image: Friends Evelyn Grimberg (left) and Minette van der Ven (right) share a positive outlook on living with the rare bleeding disorder Glanzmann’s thrombasthenia. Together, they are active in raising awareness of bleeding disorders in general, and in particular the specific issues faced by women who are haemophilia carriers or have been diagnosed with a bleeding disorder.
Image: Friends Evelyn Grimberg (left) and Minette van der Ven (right) share a positive outlook on living with the rare bleeding disorder Glanzmann’s thrombasthenia. Together, they are active in raising awareness of bleeding disorders in general, and in particular the specific issues faced by women who are haemophilia carriers or have been diagnosed with a bleeding disorder.
Minette and Evelyn, with their parents’ support, were able to enjoy being active during childhood. Today, their awareness raising activities involve physical challenges. Together, they have completed several long-distance bike rides, including a 15-day trip with a team of other cyclists with bleeding disorders from the Netherlands (their home country) to a meeting of the European Haemophilia Consortium in Norway.
Minette and Evelyn, with their parents’ support, were able to enjoy being active during childhood. Today, their awareness raising activities involve physical challenges. Together, they have completed several long-distance bike rides, including a 15-day trip with a team of other cyclists with bleeding disorders from the Netherlands (their home country) to a meeting of the European Haemophilia Consortium in Norway.
Image: The friends agree that being physically active is beneficial to their general and health and wellbeing, but are aware of the importance of being realistic about their goals and having the support and advice of their healthcare team.
Image: The friends agree that being physically active is beneficial to their general and health and wellbeing, but are aware of the importance of being realistic about their goals and having the support and advice of their healthcare team.
Image: Minette (left) and Evelyn (right) believe that more needs to be done to understand the experiences and impact of bleeding disorders on women who are either carriers or have a diagnosis. Both are involved in the Dutch Association of Haemophilia Patients.
Image: Minette (left) and Evelyn (right) believe that more needs to be done to understand the experiences and impact of bleeding disorders on women who are either carriers or have a diagnosis. Both are involved in the Dutch Association of Haemophilia Patients.
Langue:
Anglais
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1 fois par an
Sujets de la revue:
Médecine, Sciences médicales de base, Sciences médicales de base, autres, Médecine clinique, Médecine clinique, autres, Pharmacie, Pharmacologie
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