{"id":3740,"date":"2023-12-12T07:50:12","date_gmt":"2023-12-12T07:50:12","guid":{"rendered":"https:\/\/hcp.biomarin.com\/en-gb\/achondroplasia\/?page_id=3740"},"modified":"2024-09-24T08:59:58","modified_gmt":"2024-09-24T08:59:58","slug":"additional-resources","status":"publish","type":"page","link":"https:\/\/hcp.biomarin.com\/en-gb\/pku\/expert\/additional-resources\/","title":{"rendered":"Additional Resources"},"content":{"rendered":"
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Additional Resources<\/h2>\n

We are delighted to provide a range of different resources to support education and learning on phenylketonuria. These will be updated regularly with new resources. To be notified when we release new resources, you can update your account and sign in to receive communications from PKU.expert.<\/p>\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n

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Resources<\/p>\n

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View\/Download<\/a><\/p>\n <\/div>\n

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The health burden of phenylketonuria (PKU)\n<\/h2>\n

This Burden of Illness deck outlines the consequences of living with PKU, it includes an overview of PKU, the history of PKU and the neurocog effects, systemic and psycho-social manifestations of high Phe levels. Download this comprehensive resources that will help you create your presentation to help educating on PKU unmet need.<\/p>\n

Veeva code: EUCAN-PKU-00070<\/p>\n

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View\/Download<\/a><\/p>\n <\/div>\n <\/div>\n <\/div>\n <\/article>\n \n \n \n \n

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Patient Stories<\/p>\n

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Watch<\/a><\/p>\n <\/div>\n

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Pegvaliase Patient – Lisa’s story\n<\/h2>\n

This is the story of a patient who was treated with PALYNZIQ. It does not represent the experiences of other PALYNZIQ patients. Every patient has a different story to tell.<\/p>\n

For Lisa, stigmatisation was the most difficult burden of PKU, and she did not want to be defined by her condition. A low-protein diet is difficult to stick to for life, and it did not work for Lisa. Here, Lisa describes how she experienced the effects of PALYNZIQ quickly after treatment, and how the adverse events were managed. Lisa now finds it easier to concentrate, and her performance at school has improved.<\/p>\n

Time: 9:11
\nVeeva code: EUCAN-PAL-00141<\/p>\n

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Watch<\/a><\/p>\n <\/div>\n <\/div>\n <\/div>\n <\/article>\n \n \n \n \n

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Patient Stories<\/p>\n

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Watch<\/a><\/p>\n <\/div>\n

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Pegvaliase Patient – Agit’s story\n<\/h2>\n

This is the story of a patient who was treated with PALYNZIQ. It does not represent the experiences of other PALYNZIQ patients. Every patient has a different story to tell. <\/p>\n

Agit struggled all his life wanted to be like the others and have a normal life. Low-protein diet was a burden for him, it was difficult to adhere and it did not work. Here, Agit and his family describe why he decided to start on PALYNZIQ and how it impacted on his life. <\/p>\n

Time: 05:41
\nVeeva code: EUCAN-PAL-00228<\/p>\n

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Watch<\/a><\/p>\n <\/div>\n <\/div>\n <\/div>\n <\/article>\n \n \n \n \n

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Patient Stories<\/p>\n

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Watch<\/a><\/p>\n <\/div>\n

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Pegvaliase Patient – Josh’s story\n<\/h2>\n

This is the story of a patient who was treated with PALYNZIQ. It does not represent the experiences of other PALYNZIQ patients. Every patient has a different story to tell. <\/p>\n

Listen to Josh journey to self-awareness about his condition; as many PKU patients, Josh struggled keeping metabolic control but he realized how the high Phe levels were impacting on his life only when he was able to lower his Phe; He feels more fitted playing sports, more concentrated and experiencing a new sense of freedom living his new normal life. <\/p>\n

Time: 05:24
\nVeeva code: EUCAN-PAL-00227<\/p>\n

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Watch<\/a><\/p>\n <\/div>\n <\/div>\n <\/div>\n <\/article>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Useful Links\n<\/h2>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t
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Associations<\/h3>\n
    \n
  1. SSIEM<\/a><\/b><\/li>\n
  2. ACMG<\/a><\/b><\/li>\n
  3. GARROD<\/a><\/b><\/li>\n<\/ol>\n <\/div>\n<\/div>\n\n
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    This year’s events<\/h3>\n
      \n
    1. ACMG 2<\/a><\/b>024<\/a><\/strong><\/li>\n
    2. SSIEM 2024<\/a><\/b><\/li>\n
    3. GARROD Symposium 2024<\/a><\/b><\/li>\n<\/ol>\n <\/div>\n<\/div>\n\n
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      BioMarin<\/h3>\n
        \n
      1. www.liveunlimitedpku.com<\/a><\/li>\n
      2. 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":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-3740","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nPKU Expert Additional Resources -BioMarin HCP<\/title>\n<meta name=\"description\" content=\"Access essential additional resources on phenylketonuria (PKU) at our expert site for healthcare professionals.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hcp.biomarin.com\/en-gb\/pku\/expert\/additional-resources\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta 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