{"id":68640,"date":"2025-03-21T10:24:40","date_gmt":"2025-03-21T09:24:40","guid":{"rendered":"https:\/\/www.cmtc.nl\/blog\/2025\/03\/21\/zeldzame-ziekten-dag-2025\/"},"modified":"2025-03-21T10:31:21","modified_gmt":"2025-03-21T09:31:21","slug":"zeldzame-ziekten-dag-2025","status":"publish","type":"post","link":"https:\/\/www.cmtc.nl\/en\/blog\/2025\/03\/21\/zeldzame-ziekten-dag-2025\/","title":{"rendered":"Rare disease day 2025"},"content":{"rendered":"

On February 28, 2025, during the National Rare Disease Day Event at Soestdijk Palace, the prestigious Rare Angel Awards were presented to Karin Veldman, Rianne Oostenbrink,<\/strong> and 3FM Serious Request.<\/p>\n

National Rare Disease Day Event<\/strong><\/h2>\n

The National Rare Disease Day Event takes place every last day of February as part of International Rare Disease Day. More than one million Dutch people live with one of the 7,000 different rare diseases. This year, the event placed special emphasis on ultra-rare diseases\u2014conditions so rare that only a handful of patients may be known worldwide.<\/p>\n

Rare Angel Awards<\/strong><\/h2>\n

\"\"A major highlight of the evening on February 28 was the presentation of the prestigious Rare Angel Awards. This award holds a top position among the most distinguished Dutch recognitions. To be eligible, nominees must have made a significant impact on patients with rare diseases. From a shortlist of twenty nominees, the jury selected the following winners:<\/p>\n

Karin Veldman<\/strong><\/h2>\n

For more than 15 years, Karin has been passionately advocating for Ichthyosis, also known as “fish scale disease.” While personally experiencing the impact of the condition, she tirelessly works to raise awareness for rare skin diseases. She has grown into a professional patient advocate, both nationally and internationally. With integrity and dedication, she highlights the patient\u2019s perspective to doctors, scientists, and policymakers. Karin has the unique ability to unite people and bridge differences.<\/p>\n

Rianne Oostenbrink<\/strong><\/h2>\n

As a pediatrician at Erasmus MC, Rianne plays a leading role in ENCORE, the expert center for hereditary neurocognitive developmental disorders. She is the leading expert in the Netherlands on Neurofibromatosis Type 1 (NF1), a condition that causes tumors to develop in the nervous system from an early age. Together with the patient organization, she has spearheaded a unique healthcare network, bringing together all healthcare institutions involved in NF1 treatment. Additionally, she tirelessly fights at both national and international levels for access to orphan drugs for NF1, which are often costly and difficult to obtain.<\/p>\n

3FM Serious Request<\/strong><\/p>\n

The Media Award was presented to Serious Request for its highly successful 2024 edition. Broadcasting from the Glass House in Zwolle, 3FM Serious Request raised a staggering \u20ac12.5 million in December 2024 for rare metabolic diseases.<\/p>\n

3FM DJ Barend van Deelen and Metakids director Jan-Matthijs van Eendenburg accepted the award from jury chair Professor Marianne de Visser. The outstanding collaboration between NPO 3FM and Metakids ensured that the entire country took action, giving a major platform to the 10,000 families in the Netherlands with children suffering from metabolic diseases.<\/p>\n

CMTC-OVM Zeldzame Ziekten Dag video 2025<\/a><\/p>\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

On February 28, 2025, during the National Rare Disease Day Event at Soestdijk Palace, the prestigious Rare Angel Awards were presented to Karin Veldman, Rianne Oostenbrink, and 3FM Serious Request. National Rare Disease Day Event The National Rare Disease Day Event takes place every last day of February as part of International Rare Disease Day. […]<\/p>\n","protected":false},"author":2,"featured_media":68635,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[190,297],"tags":[462,463],"class_list":["post-68640","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-external-conferences-rdd-en","category-latest-news","tag-zeldzame-engel-award-en","tag-zeldzameziektendag-en"],"acf":[],"yoast_head":"\nRare disease day 2025 - CMTC-OVM<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.cmtc.nl\/en\/blog\/2025\/03\/21\/zeldzame-ziekten-dag-2025\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare disease day 2025 - CMTC-OVM\" \/>\n<meta property=\"og:description\" content=\"On February 28, 2025, during the National Rare Disease Day Event at Soestdijk Palace, the prestigious Rare Angel Awards were presented to Karin Veldman, Rianne Oostenbrink, and 3FM Serious Request. 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