60 acast.com Rarely Heard: Hunter Syndrome https://podcasters.spotify.com/pod/show/takedapharmaceuticals en Takeda Pharmaceuticals Takeda Pharmaceuticals

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]]> false Takeda Pharmaceuticals info+65e97b039ce0350017f4af3a@mg-eu.acast.com 65e97b039ce0350017f4af3a rarely-heard https://anchor.fm/s/70b4c240/podcast/rss episodic https://assets.pippa.io/shows/65e97b039ce0350017f4af3a/show-cover.jpg https://podcasters.spotify.com/pod/show/takedapharmaceuticals Rarely Heard: Hunter Syndrome https://feeds.acast.com/public/shows/65e97b039ce0350017f4af3a Episode 1: The early signs of Hunter syndrome Episode 1: The early signs of Hunter syndrome Wed, 10 Nov 2021 04:21:42 GMT 17:24 565943a9-47f6-4849-a3c8-0103f326dc4b false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-1-The-early-signs-of-Hunter-syndrome-e195na1 65e97b0f2ef812001785309f 65e97b039ce0350017f4af3a full 1 1 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

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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

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]]> Episode 2: Managing the symptoms of Hunter syndrome Episode 2: Managing the symptoms of Hunter syndrome Mon, 08 Nov 2021 16:33:10 GMT 16:25 83c3152a-3ddd-4780-a691-a5a507074bff false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-2-Managing-the-symptoms-of-Hunter-syndrome-e195nrr 65e97b0f2ef812001785309e 65e97b039ce0350017f4af3a full 1 2 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

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]]> 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

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]]> Episode 3: Improving emotional well-being for families Episode 3: Improving emotional well-being for families Sun, 07 Nov 2021 16:34:04 GMT 16:01 8b197b87-a91e-42f5-87a1-70d127c0ba95 false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-3-Improving-emotional-well-being-for-families-e195nth 65e97b0f2ef812001785309d 65e97b039ce0350017f4af3a full 1 3 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

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]]> 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

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]]> 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 Sat, 06 Nov 2021 16:35:09 GMT 23:39 9c0b6f3a-aae0-4672-8ae4-ede5dc13bc2b false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-4-A-doctors-perspective-The-spectrum-of-patients-with-Hunter-syndrome-e195num 65e97b0f2ef812001785309c 65e97b039ce0350017f4af3a full 1 4 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

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]]> 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

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]]> Episode 5: A doctor’s perspective: Multidisciplinary care for Hunter syndrome Episode 5: A doctor’s perspective: Multidisciplinary care for Hunter syndrome Fri, 05 Nov 2021 16:35:53 GMT 21:39 6fb53e44-e7bf-409a-ae1b-452b137c3453 false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-5-A-doctors-perspective-Multidisciplinary-care-for-Hunter-syndrome-e195nvr 65e97b0f2ef812001785309b 65e97b039ce0350017f4af3a full 1 5 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

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]]> 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

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]]> Episode 6: Understanding how patient organizations can support families Episode 6: Understanding how patient organizations can support families Thu, 04 Nov 2021 16:49:48 GMT 35:58 e2942824-821d-4049-af47-d9f135b2e057 false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-6-Understanding-how-patient-organizations-can-support-families-e19utpl 65e97b0f2ef812001785309a 65e97b039ce0350017f4af3a full 1 6 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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]]> 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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]]> Episode 7: A parent’s perspective: Living with Hunter syndrome Episode 7: A parent’s perspective: Living with Hunter syndrome Fri, 22 Oct 2021 17:00:07 GMT 32:24 4b70564e-f898-43e0-aed1-dbf7acc33199 false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-7-A-parents-perspective-Living-with-Hunter-syndrome-e19uu7n 65e97b0f2ef8120017853099 65e97b039ce0350017f4af3a full 1 7 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

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]]> 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

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]]> Episode 8: A parent’s perspective: The impact of neuronopathic symptoms Episode 8: A parent’s perspective: The impact of neuronopathic symptoms Thu, 21 Oct 2021 17:02:53 GMT 28:19 4ab55a68-d3fc-41cd-abf2-530a59c8b5f9 false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-8-A-parents-perspective-The-impact-of-neuronopathic-symptoms-e19uuch 65e97b0f2ef8120017853098 65e97b039ce0350017f4af3a full 1 8 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

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]]> 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

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]]> Episode 9: Hunter syndrome: A practical summary Episode 9: Hunter syndrome: A practical summary Tue, 19 Oct 2021 18:33:00 GMT 12:52 fce04879-b439-477f-a197-1cc718829484 false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-9-Hunter-syndrome-A-practical-summary-e19uuf9 65e97b0f2ef8120017853097 65e97b039ce0350017f4af3a full 1 9 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

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]]> 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

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]]> Episode 0: Trailer Episode 0: Trailer Tue, 19 Oct 2021 16:00:00 GMT 3:12 2593efa6-045c-4e0b-a407-760b441657eb false https://podcasters.spotify.com/pod/show/takedapharmaceuticals/episodes/Episode-0-Trailer-e19utik 65e97b0f2ef81200178530a0 65e97b039ce0350017f4af3a full 1 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 for more information.

]]> 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 for more information.

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