Rare Diseases Day Netherlands 2023

On Tuesday, February 28, 2023, the Rare Angel Awards were presented in Amsterdam to three award winners because of their special significance for people with rare disorders. The Awards have been presented annually since 2009.

Rare Angel in the category ‘patient or loved one’ is Marjolein van Kessel because of her tremendous effort for patients who suffer from Congenital Melanocytic Nevus: giant congenital birthmarks that can lead to serious problems.

After her son Dafnis was born with this condition, she became an active member of the Dutch patient association Nevus Netwerk Nederland. Even when he passed away fourteen years later, she kept continuing advocating in favor of this serious rare skin condition and other comparable ones. Marjolein compiled her life experiences in a book, as well as presentation tools and translated foreign comics about children who have a ‘visible’ rare condition. She contacted various similar patient associations abroad and she supports patients who create organisations in countries where these associations do not yet exist. She is also committed to numerous (inter)national associations, such as Huid Nederland, Stichting Melanoom International and ERN-Skin.

Rare angel in the category ‘Healthcare professional or scientist’ is Erik Arendsen: urologist and pioneer in the field of interstitial cystitis, also known as bladder pain syndrome. This is a rare bladder disorder that can lead to disability. Erik is one of the first specialists in the Netherlands to recognise the complexity of the condition.
He became the internationally recognised expert and throughout his career he shared his knowledge with other urologists, nurses and paramedics. Even after his retirement, he built a bladder treatment centre and participated in the continuing education for general practitioners. Erik was an empathic safe haven to his patients. He does not easily give up on a treatment, but takes promising new developments and treatments into account. He has been active within the Dutch patient association for Interstitial Cystitis for 25 years, for example within the Medical Advisory Board, the executive board and in the area of education and communication.

The Rare media angel is Ellen de Visser, who works as a science journalist for the Dutch newspaper Volkskrant. Ellen has written over a thousand articles on healthcare and scientific research, in which she always puts the patient first and regularly discusses rare disorders. She combines empathetic attention and understanding towards the impact of the condition on the daily lives of patients and their loved ones with the hopeful perspective that research and biomedical innovations can offer. This personal attention is also evident from the many interviews with healthcare providers about the patient who changed their outlook on life, collected in the book ‘That one patient’. In short, Ellen’s respectful articles have increased awareness regarding rare diseases in society, and have brought attention to the human aspects of the relationship between the patient and the health care provider.