{"id":3539,"date":"2024-02-04T17:13:24","date_gmt":"2024-02-04T17:13:24","guid":{"rendered":"https:\/\/hcp.biomarin.com\/en-gb\/achondroplasia\/?page_id=3539"},"modified":"2024-10-09T17:40:43","modified_gmt":"2024-10-09T17:40:43","slug":"achondroplasia-expert-home","status":"publish","type":"page","link":"https:\/\/hcp.biomarin.com\/en-gb\/achondroplasia\/expert\/","title":{"rendered":"Achondroplasia Expert Home"},"content":{"rendered":"
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Welcome to Achondroplasia Expert<\/h2>\n

We provide free educational resources for healthcare professionals practicing across Europe, Canada, Australia and New Zealand to facilitate improvement in clinical outcomes and quality of life for children and adults with achondroplasia.<\/p>\n

This website may contain promotional material on BioMarin products, which is displayed based on the prescribing information approved by the European Medicines Agency \u2013 EMA.<\/p>\n <\/div>\n \n

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Please be aware that marketing authorization for BioMarin products may vary from country to country, and where products are registered, they might have different labels as approved by the local regulatory agencies. Please consult with BioMarin Medical Information<\/a> for more information.<\/p>\n

Get access to the latest developments in achondroplasia, and keep yourself up to date with publication summaries, congress reviews, podcasts, and other educational videos. Register today and join a network of specialists dedicated to the management of the disease.<\/p>\n

Register or log in now<\/a><\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Latest updates\n<\/h2>\n <\/div>\n\t\t\t\t\t\t \n \n \n \n \n
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Publications<\/p>\n

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Persistent growth-promoting effects of vosoritide\u25bc\u00a0in children with achondroplasia are accompanied by improvements in physical and social aspects of health-related quality of life\n<\/h2>\n

Savarirayan et al. assessed the impact of vosoritide on growth-associated health-related quality of life (HRQoL) in children with achondroplasia. Data were gathered using the Quality of Life in Short Stature Youth (QoLISSY) questionnaire. Vosoritide improved self-reported and caregiver-reported QoLISSY physical and social scores, with the greatest increases being seen in participants with a \u2265 1 SD increase in height Z-score\u2026<\/p>\n <\/div>\n\n

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Expert Live<\/p>\n

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Vosoritide in children <2 years of age: Real world experience and practical tips \u2013 Webinar\n<\/h2>\n

For those of you who were unable to join us for this engaging and informative case-based webinar, the recording is now available on-demand! This webinar aims to provide you with insights from leading clinicians on the practicalities of vosoritide in children <2 years of age, including multidisciplinary team management, neurological considerations within the first year of life, a real-world case study and practical support for parents and caregivers.<\/p>\n

Once you have viewed the webinar, we would like to know your thoughts on the content covered by our expert faculty. Please can you take 2 minutes to complete the survey at the link below:
\nhttps:\/\/www.surveymonkey.com\/r\/RFPKPGM<\/a><\/p>\n <\/div>\n\n

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Podcast<\/p>\n

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Anthropometric Measures in Achondroplasia\n<\/h2>\n

In this podcast, Klaus Mohnike, Diana Osmund, and Michelle Eagle discuss the varying approaches in clinical practice to measuring anthropometric measures in patients with achondroplasia, and review ways towards standardisation and why consistency is important for accuracy using case studies.<\/p>\n

EU-ACH-00843<\/p>\n <\/div>\n\n

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Publications<\/h4>\n

Free slide summaries for a selection of papers <\/strong>
\nThe Editorial Committee regularly select the most relevant and up-to-date publications for review, with slide summaries of the papers available to download.<\/p>\n \n <\/div>\n

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View all Publications <\/a><\/p>\n <\/div>\n<\/div>\n\n

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Educational Content<\/h4>\n

Free interactive videos, tutorials and assessments <\/strong>
\nA range of distance learning programmes to meet the educational need of healthcare professionals in achondroplasia. Key topics of interest have been identified through consultation and guidance from our Educational Committee.<\/p>\n \n <\/div>\n

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View all Educational Content<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Podcasts<\/h3>\n

Freely accessible podcasts<\/strong>
\nWorld leading experts discussing a wide variety of topics in achondroplasia. <\/p>\n\t\t\t\t\t\t \t\t\t\t\t <\/div>\n\t\t\t\t\t

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Listen to our podcasts <\/a><\/p>\n <\/div>\n\t\t\t\t\t <\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Editorial Committee\n<\/h2>\n \t\t\t\t\n
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Dr Genevi\u00e8ve Baujat\n<\/h3>\n

Geneticist, Principal Investigator
\nH\u00f4pital Necker-Enfants Malades, Paris, France<\/em><\/p>\n

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Dr Encarna Guillen-Navarro\n<\/h3>\n

Clinical Geneticist<\/strong>
\nVirgen de la Arrixaca University Hospital, IMIB, University of Murcia, Spain<\/em><\/p>\n

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Dr Heike Hoyer-Kuhn\n<\/h3>\n

Paediatrician<\/strong>
\nChildren\u2019s Hospital, University of Cologne, Germany<\/p>\n

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Dr S\u00e9rgio B. Sousa\n<\/h3>\n

Medical Geneticist<\/strong>
\nHospital Pedia\u0301trico de Coimbra, Coimbra, Portugal<\/em><\/p>\n

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Associations<\/h3>\n
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  1. ENDO<\/a><\/li>\n
  2. EPOS<\/a><\/li>\n
  3. ACMG<\/a><\/li>\n
  4. ESPE<\/a><\/li>\n
  5. PES<\/a><\/li>\n
  6. JSPE<\/a><\/li>\n
  7. ISDS<\/a><\/li>\n<\/ol>\n <\/div>\n<\/div>\n\n
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    Upcoming Events<\/h3>\n
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    1. ACMG 2024<\/a><\/li>\n
    2. PES 2024<\/a><\/li>\n
    3. ICCBH 2024<\/a><\/li>\n
    4. ISDS 2024<\/a><\/li>\n
    5. ESPE 2024<\/a><\/li>\n<\/ol>\n <\/div>\n<\/div>\n\n
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      BioMarin<\/h3>\n
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      1. hcp.achondroplasia.com<\/a><\/li>\n
      2. Achondroplasia.com<\/a><\/li>\n
      3. BioMarin<\/a><\/li>\n<\/ol>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"acf":[],"yoast_head":"\nAchondroplasia Expert Home - BioMarin HCP<\/title>\n<meta name=\"description\" content=\"Discover expert insights and resources on achondroplasia at BioMarin. 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