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
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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 (https://acast.com/privacy) for more information.
8 Nov 2021
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 (https://acast.com/privacy) for more information.
7 Nov 2021
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 (https://acast.com/privacy) for more information.
6 Nov 2021
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 (https://acast.com/privacy) for more information.
5 Nov 2021
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 (https://acast.com/privacy) for more information.
4 Nov 2021
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
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22 Oct 2021
Episode 7: A parent’s perspective: Living with Hunter syndrome
The diagnosis of Hunter syndrome compels families to re-evaluate their priorities and rethink their future plans. Bob Stevens joins us again, but this time from a parent’s perspective, to share his family’s journey as his two adult sons navigate life with the attenuated form of 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: September 2021
VV-MEDMAT-52004
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
21 Oct 2021
Episode 8: A parent’s perspective: The impact of neuronopathic symptoms
The neuronopathic form of Hunter syndrome can have a devastating effect on families. In this episode, we are joined by Avram Joseph, whose son Kalel is living with this severe form of the disease. Avram provides us with a heartwarming account of how his family has come together to help Kalel and each other manage life with 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: September 2021
VV-MEDMAT-54314
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
19 Oct 2021
Episode 9: Hunter syndrome: A practical summary
This final episode is an overview of everything we have learned about Hunter syndrome. We also consolidate the practical tips from our guests to give you a summary of their advice on living with 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: September 2021
VV-MEDMAT-54312
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
19 Oct 2021
Episode 0: Trailer
Season one of Rarely Heard is all about Hunter syndrome. This trailer is an introduction to the series and a preview of the conversations with our guest experts. Join us on this journey for a comprehensive and holistic look at life with 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: September 2021
VV-MEDMAT-56178
Hosted on Acast. See acast.com/privacy (https://acast.com/privacy) for more information.
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