10 avsnitt

Rarely Heard is about Hunter syndrome, a rare and life-changing genetic condition and is intended for families, patients, and anyone interested in learning about the disease.This podcast is initiated and funded by Takeda Pharmaceuticals and is intended for an international audience outside the USA and UK. The information shared is for educational purposes and does not constitute clinical recommendations for diagnosing or managing disease. The speakers received honoraria from Takeda for their participation. The views expressed reflect the experience and opinion of the speaker. VV-MEDMAT-45197
Hosted on Acast. See acast.com/privacy for more information.

Rarely Heard: Hunter Syndrome Takeda Pharmaceuticals

    • Hälsa och motion

Rarely Heard is about Hunter syndrome, a rare and life-changing genetic condition and is intended for families, patients, and anyone interested in learning about the disease.This podcast is initiated and funded by Takeda Pharmaceuticals and is intended for an international audience outside the USA and UK. The information shared is for educational purposes and does not constitute clinical recommendations for diagnosing or managing disease. The speakers received honoraria from Takeda for their participation. The views expressed reflect the experience and opinion of the speaker. VV-MEDMAT-45197
Hosted on Acast. See acast.com/privacy for more information.

    Episode 1: The early signs of Hunter syndrome

    Episode 1: The early signs of Hunter syndrome

    Hunter syndrome is a rare and life-changing disease. In this introductory episode, we provide a basic overview of Hunter syndrome, its cause and genetic inheritance. We also go over its common signs and symptoms, as well as the journey to a diagnosis. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. This information of disease could have age restrictions in some countries. Please follow these restrictions. The information, views and opinions of the presenter do not necessarily reflect the views and opinions of Takeda.
    Date of recording: April 2021
    VV-MEDMAT-45370

    Hosted on Acast. See acast.com/privacy for more information.

    • 17 min
    Episode 2: Managing the symptoms of Hunter syndrome

    Episode 2: Managing the symptoms of Hunter syndrome

    Hunter syndrome has a wide range of clinical manifestations and requires a complex treatment and management strategy. This episode details the multiorgan nature of the disease, potential management options, and how they can reduce the likelihood of complications for patients. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. This information of disease could have age restrictions in some countries. Please follow these restrictions. The information, views and opinions of the presenter do not necessarily reflect the views and opinions of Takeda.
    Date of recording: April 2021
    VV-MEDMAT-45371

    Hosted on Acast. See acast.com/privacy for more information.

    • 16 min
    Episode 3: Improving emotional well-being for families

    Episode 3: Improving emotional well-being for families

    Parents and caregivers have to deal with many challenges in their daily lives and complicated emotions that affect their well-being. This episode addresses the psychological aspects of caring for a child with a complex and chronic disease. We provide a holistic overview of life with Hunter syndrome and some suggestions for families. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. This information of disease could have age restrictions in some countries. Please follow these restrictions. The information, views and opinions of the presenter do not necessarily reflect the views and opinions of Takeda.
    Date of recording: April 2021
    VV-MEDMAT-45372

    Hosted on Acast. See acast.com/privacy for more information.

    • 16 min
    Episode 4: A doctor’s perspective: The spectrum of patients with Hunter syndrome

    Episode 4: A doctor’s perspective: The spectrum of patients with Hunter syndrome

    The clinical symptoms of Hunter syndrome appear across a diverse spectrum. In this episode, we are joined by Dr Barbara Burton, a specialist in the disease. Dr Burton discusses how Hunter syndrome has impacted patients in her clinical practice and the challenges in reaching a diagnosis. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. This information of disease could have age restrictions in some countries. Please follow these restrictions. The information, views and opinions of the presenter do not necessarily reflect the views and opinions of Takeda.
    Date of recording: April 2021
    VV-MEDMAT-45374

    Hosted on Acast. See acast.com/privacy for more information.

    • 23 min
    Episode 5: A doctor’s perspective: Multidisciplinary care for Hunter syndrome

    Episode 5: A doctor’s perspective: Multidisciplinary care for Hunter syndrome

    Managing Hunter syndrome is a complex and life-long process, with many specialists involved in caring for patients. In the second part of our interview with Dr Barbara Burton, we take a deeper look at the importance of a coordinated care approach in managing Hunter syndrome. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. This information of disease could have age restrictions in some countries. Please follow these restrictions. The information, views and opinions of the presenter do not necessarily reflect the views and opinions of Takeda.
    Date of recording: April 2021
    VV-MEDMAT-45377

    Hosted on Acast. See acast.com/privacy for more information.

    • 21 min
    Episode 6: Understanding how patient organizations can support families

    Episode 6: Understanding how patient organizations can support families

    Living with Hunter syndrome is overwhelming, but there are many sources of support available. This episode features Bob Stevens (UK MPS Society) and Terri Klein (US National MPS Society), who are very familiar with the challenges that families face. They explain the importance of patient organizations and share practical advice from their many years of experience. For more information on these organizations, please visit www.mpssociety.org.uk and www.mpssociety.org. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. This information of disease could have age restrictions in some countries. Please follow these restrictions. The information, views and opinions of the presenter do not necessarily reflect the views and opinions of Takeda.
    Date of recording: September 2021
    VV-MEDMAT-54315

    Hosted on Acast. See acast.com/privacy for more information.

    • 35 min

Mest populära poddar inom Hälsa och motion

Johannes Hansen Podcast
Johannes Hansen
Not Fanny Anymore
Not Fanny Anymore
Kristin Kaspersen Nyfiken på
Perfect Day Media
Bara en till...
Nemo Hedén
Hälsorevolutionen
Acast
Huberman Lab
Scicomm Media