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Rarely Heard: Fabry Disease
Episode 7: Life with Fabry disease – genetic counselling
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).
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1. Episode 1: What is Fabry disease?
34:37||Ep. 1Living 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).2. Episode 2: How can Fabry disease be managed?
34:40||Ep. 2In 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).3. Episode 3: Caring for the heart and kidneys in Fabry disease
27:06||Ep. 3This 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).4. Episode 4: Life with Fabry disease – chronic pain, fatigue, and neurological aspects
35:49||Ep. 4In 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).5. Episode 5: Life with Fabry disease – psychological and emotional wellbeing
22:45||Ep. 5In 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).6. Episode 6: Life with Fabry disease – tips for coping
35:23||Ep. 6In 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).8. Episode 8: Life with Fabry disease – finding the help you need
16:15||Ep. 8Navigating 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).9. Episode 9: That’s a wrap!
09:38||Ep. 9In 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).