60 acast.com Rarely Heard: Gaucher Disease https://shows.acast.com/rarely-heard-gaucher-disease en Takeda Pharmaceuticals gaucher disease,disease management,rare disease,rare genetic disease,genetic disease Takeda Pharmaceuticals

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]]> false Takeda Pharmaceuticals global.rare.diseases.hosting@takeda.com 64351103df57c7001167b29a rarely-heard-gaucher-disease episodic https://assets.pippa.io/shows/cover/1681199318597-594020b01a3f9a86fb3b7992bdff7e8f.jpeg https://shows.acast.com/rarely-heard-gaucher-disease Rarely Heard: Gaucher Disease Episode 1: What is Gaucher disease? Episode 1: What is Gaucher disease? Tue, 11 Apr 2023 08:50:19 GMT 28:43 64351177cc2bdf00117b3bbd false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/64351177cc2bdf00117b3bbd 64351177cc2bdf00117b3bbd 64351103df57c7001167b29a full 1 Living with a rare disease can be challenging, and finding the information you need can be difficult. In this first episode, we have a discussion between two internationally renowned Gaucher disease experts, Dr Jeff Szer from Australia and Dr Gregory Pastores, who is currently based in Ireland. They will discuss the basics of Gaucher disease and share insights based on their years of clinical experience.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77433 (date of preparation: February 2023).

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

]]> Living with a rare disease can be challenging, and finding the information you need can be difficult. In this first episode, we have a discussion between two internationally renowned Gaucher disease experts, Dr Jeff Szer from Australia and Dr Gregory Pastores, who is currently based in Ireland. They will discuss the basics of Gaucher disease and share insights based on their years of clinical experience.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77433 (date of preparation: February 2023).

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

]]> Episode 2: The power of a diagnosis Episode 2: The power of a diagnosis Tue, 11 Apr 2023 07:59:15 GMT 32:47 643511aff699c5001125fb5d false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/643511aff699c5001125fb5d 643511aff699c5001125fb5d 64351103df57c7001167b29a full 2 Diagnosing rare diseases like Gaucher disease can take many years, so reaching the correct diagnosis can be a profound experience for patients and their families. In this second episode, we explore the Gaucher disease diagnostic journey and the power of a diagnosis with expert Dr Jeff Szer and Gidon Goodman, a Gaucher disease patient and President of the Gaucher Association of Australia and New Zealand.                                  

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77434 (date of preparation: February 2023).

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

]]> Diagnosing rare diseases like Gaucher disease can take many years, so reaching the correct diagnosis can be a profound experience for patients and their families. In this second episode, we explore the Gaucher disease diagnostic journey and the power of a diagnosis with expert Dr Jeff Szer and Gidon Goodman, a Gaucher disease patient and President of the Gaucher Association of Australia and New Zealand.                                  

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77434 (date of preparation: February 2023).

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]]> Episode 3: Managing Gaucher disease Episode 3: Managing Gaucher disease Tue, 11 Apr 2023 07:58:59 GMT 37:04 643511dcdd3f7d001165ca6c false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/643511dcdd3f7d001165ca6c 643511dcdd3f7d001165ca6c 64351103df57c7001167b29a full 3 Following a diagnosis of Gaucher disease, it is essential to understand what is next in terms of treatment and living with the disease. This episode features two very experienced Gaucher disease experts, Dr Jeff Szer from Australia and Dr Derralynn Hughes from the UK, who talk about the management of Gaucher disease and share what is important and relevant for patients and family members.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77435 (date of preparation: February 2023).

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

]]> Following a diagnosis of Gaucher disease, it is essential to understand what is next in terms of treatment and living with the disease. This episode features two very experienced Gaucher disease experts, Dr Jeff Szer from Australia and Dr Derralynn Hughes from the UK, who talk about the management of Gaucher disease and share what is important and relevant for patients and family members.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77435 (date of preparation: February 2023).

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

]]> Episode 4: When your child has Gaucher disease Episode 4: When your child has Gaucher disease Tue, 11 Apr 2023 07:57:50 GMT 35:54 6435120fbe412000116e24e2 false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/6435120fbe412000116e24e2 6435120fbe412000116e24e2 64351103df57c7001167b29a full 4 Navigating Gaucher disease as a parent of an affected child can feel like charting a world of unknowns. In this episode, we hear from specialist Dr Gregory Pastores and Karen Goodman, whose son, Gidon, has been diagnosed with Gaucher disease since the age of three. They will share their perspectives and experience on how best to approach Gaucher disease as a parent.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77436 (date of preparation: February 2023).

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

]]> Navigating Gaucher disease as a parent of an affected child can feel like charting a world of unknowns. In this episode, we hear from specialist Dr Gregory Pastores and Karen Goodman, whose son, Gidon, has been diagnosed with Gaucher disease since the age of three. They will share their perspectives and experience on how best to approach Gaucher disease as a parent.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77436 (date of preparation: February 2023).

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

]]> Episode 5: Living with Gaucher disease Episode 5: Living with Gaucher disease Tue, 11 Apr 2023 07:54:40 GMT 23:32 64351240f699c500112611ee false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/64351240f699c500112611ee 64351240f699c500112611ee 64351103df57c7001167b29a full 5 What are the ups and downs, challenges, and positives for patients living with Gaucher disease? In this episode, Gaucher disease expert Dr Derralynn Hughes from the UK talks with patient Paul about what it means to live with Gaucher disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77437 (date of preparation: February 2023).

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

]]> What are the ups and downs, challenges, and positives for patients living with Gaucher disease? In this episode, Gaucher disease expert Dr Derralynn Hughes from the UK talks with patient Paul about what it means to live with Gaucher disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77437 (date of preparation: February 2023).

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

]]> Episode 6: Staying healthy with Gaucher disease Episode 6: Staying healthy with Gaucher disease Tue, 11 Apr 2023 06:55:25 GMT 17:15 6435126de8274000119b53d3 false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/6435126de8274000119b53d3 6435126de8274000119b53d3 64351103df57c7001167b29a full 6 In this episode, the conversation between Dr Derralynn Hughes and Paul continues as they take a deep dive into the importance of staying physically and emotionally healthy while living with Gaucher disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77438 (date of preparation: February 2023).

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

]]> In this episode, the conversation between Dr Derralynn Hughes and Paul continues as they take a deep dive into the importance of staying physically and emotionally healthy while living with Gaucher disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77438 (date of preparation: February 2023).

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

]]> Episode 7: Looking towards the future Episode 7: Looking towards the future Tue, 11 Apr 2023 06:53:21 GMT 35:07 643512a5a1b3f20011beaa04 false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/643512a5a1b3f20011beaa04 643512a5a1b3f20011beaa04 64351103df57c7001167b29a full 7 In this episode, Karen Goodman and Dr Gregory Pastores discuss family planning and pregnancy for those affected by Gaucher disease, as well as potential future advances in the management of the disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77439 (date of preparation: February 2023).

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

]]> In this episode, Karen Goodman and Dr Gregory Pastores discuss family planning and pregnancy for those affected by Gaucher disease, as well as potential future advances in the management of the disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77439 (date of preparation: February 2023).

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

]]> Episode 8: Getting the help you need Episode 8: Getting the help you need Tue, 11 Apr 2023 06:52:44 GMT 37:35 643512f8d5ecd60011eef163 false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/643512f8d5ecd60011eef163 643512f8d5ecd60011eef163 64351103df57c7001167b29a full 8 This episode features Karen Goodman and her son, Gidon, who was diagnosed with Gaucher disease at the age of three. Together, they co-founded the patient organisation, Gaucher Association of Australia and New Zealand, in 2018. They will discuss the importance of patient organisations and how they can support families living with Gaucher disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77440 (date of preparation: February 2023).

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

]]> This episode features Karen Goodman and her son, Gidon, who was diagnosed with Gaucher disease at the age of three. Together, they co-founded the patient organisation, Gaucher Association of Australia and New Zealand, in 2018. They will discuss the importance of patient organisations and how they can support families living with Gaucher disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77440 (date of preparation: February 2023).

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

]]> Episode 9: That’s a wrap! Episode 9: That’s a wrap! Tue, 11 Apr 2023 06:50:49 GMT 12:33 6435160aa20c250012a66792 false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/episode-9-thats-a-wrap 6435160aa20c250012a66792 64351103df57c7001167b29a episode-9-thats-a-wrap full 9 In this last episode, we summarise what we have learnt about Gaucher disease and consolidate the most valuable tips and tricks that our guest speakers have shared.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77441 (date of preparation: February 2023).

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

]]> In this last episode, we summarise what we have learnt about Gaucher disease and consolidate the most valuable tips and tricks that our guest speakers have shared.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77441 (date of preparation: February 2023).

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

]]> Episode 0: Trailer Episode 0: Trailer Tue, 11 Apr 2023 06:44:32 GMT 3:09 64351148f699c5001125e9fe false https://shows.acast.com/rarely-heard-gaucher-disease/episodes/64351148f699c5001125e9fe 64351148f699c5001125e9fe 64351103df57c7001167b29a trailer Rarely Heard: Gaucher Disease is a nine-part series featuring experts, patients, and caregivers who share practical advice, insights, and perspectives on living with Gaucher disease. This trailer is an introduction to the series and a preview of the conversations with our guest speakers. Join us on this journey for a comprehensive and holistic look at life with Gaucher disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77432 (date of preparation: February 2023).

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

]]> Rarely Heard: Gaucher Disease is a nine-part series featuring experts, patients, and caregivers who share practical advice, insights, and perspectives on living with Gaucher disease. This trailer is an introduction to the series and a preview of the conversations with our guest speakers. Join us on this journey for a comprehensive and holistic look at life with Gaucher disease.

 

This podcast is initiated and funded by Takeda Pharmaceuticals and intended for an international audience outside the USA. The speakers may have received honoraria from Takeda for their participation, and the views expressed reflect the experience and opinion of the speaker. This podcast is available for information purposes only; it is not intended to replace the need for medical consultations. For further information and advice, please consult your healthcare provider. The impact and symptoms of Gaucher disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Gaucher disease. Individual experience may vary. VV-MEDMAT-77432 (date of preparation: February 2023).

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

]]>