Expert Talks

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Breaking barriers: sustaining metabolic control in PKU

Multiple factors make living with PKU challenging, including the burden of a lifelong restricted diet and the consequences of elevated Phe levels. In this webinar, experts (Dr Ania Muntau, Dr Cary Harding and Dr Stephanie Sacharow) engage in an interactive panel discussion to share their personal experiences and insights on the importance of reducing blood Phe levels and strategies to achieve sustained metabolic control.

Time: 1:07:53
Veeva code: EUCAN-PAL-00219

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2024 SSIEM – BioMarin symposium

With new data emerging from both clinical trials and real-world observations, the management of PKU is ever evolving. In this short video, the expert panel (Dr Johannes Krämer, Prof Ania Muntau and Prof Júlio César Rocha) highlights the key messages of the BioMarin satellite symposium at SSIEM 2024, sharing their personal experiences and insights on navigating the changing treatment landscape by answering key questions on living with phenylketonuria, treatment goals, and management strategies. If you are interested to know more about latest researches and data presented at 2024 SSIEM on PKU, please download the conference summary at this link.

Time: 8:40
Veeva code: EUCAN-PAL-00241

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Medical Nutritional treatment and its role in PKU management

In this video, Prof Júlio Rocha (NOVA Medical School, University NOVA of Lisbon, Portugal) presents on medical nutritional treatment and its role in PKU management. He examines what medical nutritional therapy involves, challenges around dietary compliance, feeding issues and nutritional imbalance, measurement of nutritional status, and management of maternal PKU.

Time: 28:52
Veeva code: EU-PKU-00517

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SSIEM 2023 New perspectives in PKU management: Dr Frank Rutsch

Dr Frank Rutsch (Münster University Children’s Hospital, Münster, Germany) presented as part of the 2023 SSIEM satellite symposium “New perspectives in PKU management: the change we can see”,and provides some real-world insight into the impact of pegvaliase from use within his clinical practice.

Time: 12:57
Veeva code: EU-PAL-00602

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SSIEM 2023 New perspectives in PKU management: Johannes Krämer

Dr Johannes Krämer (Ulm University Medical School, Ulm, Germany) presented as part of the 2023 SSIEM satellite symposium “New perspectives in PKU management: the change we can see”, Dr Krämer talks about his experiences at a small PKU centre in Ulm, Germany, and how they set up and overcame the challenges to deliver pegvaliase to their patients.

Time: 26:08
Veeva code: EU-PAL-00601

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SSIEM 2023 New perspectives in PKU management: Dr Cary Harding

Dr Cary Harding (Oregon Health & Science University, Portland, OR, USA) presented at SSIEM 2023 at the satellite symposium “New perspectives in PKU management: the change we can see”. He talks about PKU and current treatment options, before talking about his experiences with pegvaliase, both during the clinical trials and in post-marketing, commercial use in clinical practice.

Time: 18:54
Veeva code: EU-PAL-00600

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A dietitians’discussion on Pegvaliase injection

In this podcast Ms Fran Rohr, Managing Partner at Met Ed and formerly with Boston Children’s Hospital, US, and Prof Julio Rocha from NOVA Medical School, Lisbon, Portugal, talk discuss treatment with pegvaliase injection from their perspective as dietitians, covering multiple topics including treatment initiation and associated immune reactions, evaluating patients for treatment, the role of the multidisciplinary team when initiating patients on pegvaliase, protocols for starting pegvaliase injection, managing patient expectations, and the challenges and opportunities associated with pegvaliase injection, with reference to patient case studies.

Time:1hr 22
Veeva code: EU-PAL-0467

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