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Prof. Dr. Suzanne Pasmans: Rare Angel Award

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Prof. Dr. Suzanne Pasmans: Rare Angel Award

in recognition of her many years of commitment to patients with rare skin and blood vessel diseases

On Saturday, February 26 (2 days before Rare Disease Day on February 28), the Rare Angel Awards were presented to four award winners at Soestdijk Palace because of their special significance for people with rare diseases. The Awards have been presented annually since 2009.

One of our medical advisors Prof. dr. Suzanne Pasmans received this award in the category ‘Healthcare professional / Scientist”. Suzanne heads the Expertise Center for Rare Skin Disorders at Erasmus MC. She has been committed to patients with rare skin and blood vessel disorders for more than 20 years. For many children, she is the last hope of good care. Patients particularly appreciate that Suzanne has an eye for the whole person and not just the patient with a condition. “You feel seen”. Colleagues also praise her involvement with PhD students.

The winner in the ‘Policy’ category is Dr. Sonja van Weely (she is also a good acquaintance of ours) and has been working in the field of rare diseases for 37 years, first as a researcher and then as a policy officer at ZonMw.

In the category ‘Patient Representative’, Mieke van Leeuwen received the award of being an employee and volunteer at patient organizations. She has been active for more than forty years for people with very rare syndromes and intellectual disabilities. She was a forerunner in the field of patient participation: making the patient’s voice heard in professional organizations in the field of research and care. Mieke always had an eye for overarching themes of syndromes and in this way brought people together.

Ysbrand Poortman is the (co-)founder of numerous national and international organizations in the field of rare and hereditary disorders. In the Netherlands this concerns, for example, Muscle Diseases Netherlands, the VSOP, the Erfocentrum and the Forum Biotechnology and Genetics. Ysbrand has played a major role in the implementation of Preconception Care and Clinical Genetics in the Netherlands. Timely health information to be able to make the right decisions, both at the start of and throughout life, is central to his entire life and work.

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