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

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]]> false Takeda Pharmaceuticals global.rare.diseases.hosting@takeda.com 643507e2c06561001184a9ab rarely-heard-fabry-disease episodic https://assets.pippa.io/shows/cover/1681196725107-653f086d637a81779a0bbbb0826d6dfc.jpeg https://shows.acast.com/rarely-heard-fabry-disease Rarely Heard: Fabry Disease Episode 1: What is Fabry disease? Episode 1: What is Fabry disease? Tue, 11 Apr 2023 07:24:40 GMT 34:37 643508e1cc2bdf0011799798 false https://shows.acast.com/rarely-heard-fabry-disease/episodes/643508e1cc2bdf0011799798 643508e1cc2bdf0011799798 643507e2c06561001184a9ab full 1 Living with Fabry disease, or any rare disease, can be very challenging, and finding the information you need can be difficult. In the first episode, Dr Charles Denaro from Australia explains the basics of Fabry disease – what causes it and how it affects individuals.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77418 (date of preparation: February 2023).

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

]]> Living with Fabry disease, or any rare disease, can be very challenging, and finding the information you need can be difficult. In the first episode, Dr Charles Denaro from Australia explains the basics of Fabry disease – what causes it and how it affects individuals.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77418 (date of preparation: February 2023).

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

]]> Episode 2: How can Fabry disease be managed? Episode 2: How can Fabry disease be managed? Tue, 11 Apr 2023 07:21:27 GMT 34:40 64350987c06561001184f7a4 false https://shows.acast.com/rarely-heard-fabry-disease/episodes/episode-2-how-can-fabry-disease-be-managed 64350987c06561001184f7a4 643507e2c06561001184a9ab episode-2-how-can-fabry-disease-be-managed full 2 In this episode, Dr Charles Denaro from Australia and Dr Charles Lourenço from Brazil discuss Fabry disease management using various treatments. We find out how Fabry disease therapies work and how interventions should be tailored to meet the needs of individual patients.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77421 (date of preparation: February 2023).

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]]> In this episode, Dr Charles Denaro from Australia and Dr Charles Lourenço from Brazil discuss Fabry disease management using various treatments. We find out how Fabry disease therapies work and how interventions should be tailored to meet the needs of individual patients.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77421 (date of preparation: February 2023).

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]]> Episode 3: Caring for the heart and kidneys in Fabry disease Episode 3: Caring for the heart and kidneys in Fabry disease Tue, 11 Apr 2023 07:19:55 GMT 27:06 64350c03de066f0011072d97 false https://shows.acast.com/rarely-heard-fabry-disease/episodes/episode-3-caring-for-the-heart-and-kidneys-in-fabry-disease 64350c03de066f0011072d97 643507e2c06561001184a9ab episode-3-caring-for-the-heart-and-kidneys-in-fabry-disease full 3 This episode features Dr Charles Denaro, who joins us again to explain how Fabry disease affects the heart and kidneys. Dr Denaro shares his advice on how patients can care for these organs to reduce the risk of complications.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77423 (date of preparation: February 2023).

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]]> This episode features Dr Charles Denaro, who joins us again to explain how Fabry disease affects the heart and kidneys. Dr Denaro shares his advice on how patients can care for these organs to reduce the risk of complications.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77423 (date of preparation: February 2023).

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]]> Episode 4: Life with Fabry disease – chronic pain, fatigue, and neurological aspects Episode 4: Life with Fabry disease – chronic pain, fatigue, and neurological aspects Tue, 11 Apr 2023 07:17:18 GMT 35:49 64350cc6f699c50011250b62 false https://shows.acast.com/rarely-heard-fabry-disease/episodes/episode-4-life-with-fabry-disease-chronic-pain-fatigue-and-n 64350cc6f699c50011250b62 643507e2c06561001184a9ab episode-4-life-with-fabry-disease-chronic-pain-fatigue-and-n full 4 In this episode, we first talk with Martynas, a patient living with Fabry disease, then we hear from Dr Charles Denaro. They will share their experiences and tips on managing chronic pain, fatigue, and the neurological aspects 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77425 (date of preparation: February 2023).

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]]> In this episode, we first talk with Martynas, a patient living with Fabry disease, then we hear from Dr Charles Denaro. They will share their experiences and tips on managing chronic pain, fatigue, and the neurological aspects 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77425 (date of preparation: February 2023).

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

]]> Episode 5: Life with Fabry disease – psychological and emotional wellbeing Episode 5: Life with Fabry disease – psychological and emotional wellbeing Tue, 11 Apr 2023 07:16:20 GMT 22:45 64350d40f699c5001125256b false https://shows.acast.com/rarely-heard-fabry-disease/episodes/episode-5-life-with-fabry-disease-psychological-and-emotiona 64350d40f699c5001125256b 643507e2c06561001184a9ab episode-5-life-with-fabry-disease-psychological-and-emotiona full 5 In this episode, we first talk with Dr Berthold Wilden, then we speak with Martynas, both of whom are patients living with Fabry disease. They will tell us about their life with Fabry disease and share insights and advice on managing the psychological effects of living with a rare disease. We will also hear how patient organisations can step in to support families with their mental health and emotional wellbeing.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77427 (date of preparation: February 2023).

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

]]> In this episode, we first talk with Dr Berthold Wilden, then we speak with Martynas, both of whom are patients living with Fabry disease. They will tell us about their life with Fabry disease and share insights and advice on managing the psychological effects of living with a rare disease. We will also hear how patient organisations can step in to support families with their mental health and emotional wellbeing.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77427 (date of preparation: February 2023).

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]]> Episode 6: Life with Fabry disease – tips for coping Episode 6: Life with Fabry disease – tips for coping Tue, 11 Apr 2023 07:15:29 GMT 35:23 64350dfda20c250012a4fdcc false https://shows.acast.com/rarely-heard-fabry-disease/episodes/episode-6-life-with-fabry-disease-tips-for-coping 64350dfda20c250012a4fdcc 643507e2c06561001184a9ab episode-6-life-with-fabry-disease-tips-for-coping full 6 In this episode, Martynas and Dr Charles Lourenço share the challenges and their knowledge of navigating daily life with Fabry 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77428 (date of preparation: February 2023).

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

]]> In this episode, Martynas and Dr Charles Lourenço share the challenges and their knowledge of navigating daily life with Fabry 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77428 (date of preparation: February 2023).

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

]]> Episode 7: Life with Fabry disease – genetic counselling Episode 7: Life with Fabry disease – genetic counselling Tue, 11 Apr 2023 07:14:57 GMT 29:49 64350e92e8274000119aa04c false https://shows.acast.com/rarely-heard-fabry-disease/episodes/episode-7-life-with-fabry-disease-genetic-counselling 64350e92e8274000119aa04c 643507e2c06561001184a9ab episode-7-life-with-fabry-disease-genetic-counselling full 7 Genetic counselling can help patients and families affected by Fabry disease to understand the inheritance of the disease and identify at-risk family members. In this episode, Martynas is joined by Dr Charles Lourenço to explore what it involves and share practical advice on how it can support patients and their families.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77429 (date of preparation: February 2023).

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

]]> Genetic counselling can help patients and families affected by Fabry disease to understand the inheritance of the disease and identify at-risk family members. In this episode, Martynas is joined by Dr Charles Lourenço to explore what it involves and share practical advice on how it can support patients and their families.

 

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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77429 (date of preparation: February 2023).

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

]]> Episode 8: Life with Fabry disease – finding the help you need Episode 8: Life with Fabry disease – finding the help you need Tue, 11 Apr 2023 07:13:15 GMT 16:15 64350edf9709ae00114059cd false https://shows.acast.com/rarely-heard-fabry-disease/episodes/episode-8-life-with-fabry-disease-finding-the-help-you-need 64350edf9709ae00114059cd 643507e2c06561001184a9ab episode-8-life-with-fabry-disease-finding-the-help-you-need full 8 Navigating the rare disease environment can be daunting for patients. In this episode, we are joined by Dr Berthold Wilden, who explains how patient organisations can support families living with Fabry 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77430 (date of preparation: February 2023).

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

]]> Navigating the rare disease environment can be daunting for patients. In this episode, we are joined by Dr Berthold Wilden, who explains how patient organisations can support families living with Fabry 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77430 (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 07:12:24 GMT 9:38 64350f24df57c70011675950 false https://shows.acast.com/rarely-heard-fabry-disease/episodes/episode-9-thats-a-wrap 64350f24df57c70011675950 643507e2c06561001184a9ab episode-9-thats-a-wrap full 9 In this last episode, let’s summarise what we have learnt about Fabry disease and consolidate the valuable tips and advice 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77431 (date of preparation: February 2023).

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

]]> In this last episode, let’s summarise what we have learnt about Fabry disease and consolidate the valuable tips and advice 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77431 (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 07:10:24 GMT 2:41 64350894038a1200114e8669 false https://shows.acast.com/rarely-heard-fabry-disease/episodes/64350894038a1200114e8669 64350894038a1200114e8669 643507e2c06561001184a9ab trailer Rarely Heard: Fabry Disease is a nine-part series featuring experts, patients, and caregivers who share practical advice, insights, and perspectives on living with Fabry 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 Fabry 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77426 (date of preparation: February 2023).

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

]]> Rarely Heard: Fabry Disease is a nine-part series featuring experts, patients, and caregivers who share practical advice, insights, and perspectives on living with Fabry 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 Fabry 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 Fabry disease described in this podcast are based on individual patient experience and may not be applicable to all patients with Fabry disease. Individual experience may vary. VV-MEDMAT-77426 (date of preparation: February 2023).

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

]]>