The Rare Disease Podcast

Let us know what you think of this episode! We read every comment we receive.In this episode, we hear from the brilliant Dr. Lisa Kaufman, a Consultant Community Paediatrician, Associate Medical Director, and Communication Skills Trainer with Manchester Local Care Organisation (yes, she wears many hats!).Lisa shared her insights during her talk at our last unusual suspects event. The talk, 'Core Communication Skills'  unpacks what it really means to listen well, how we can improve understanding across roles, and why simple communication habits can make all the difference in complex healthcare settings.Whether you're a medical student, clinician, or just passionate about improving patient care, this episode will leave you reflecting on how you connect, speak, and really hear the people you work with.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Let us know what you think of this episode! We read every comment we receive.For today's episode of the podcast Lucy speaks with Charlotte Chapman Hart, who has just completed her first year of her two year ambassador program with us. Charlotte also works as a project manager for an NHS trust and recently won the individual of the year award which recognises an individual who skills and actions have gone above and beyond to deliver excellence in their roles and, and really contribute meaningfully.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Let us know what you think of this episode! We read every comment we receive.For today's episode of the podcast, Lucy chats to Beth and Katie about a recent report that was published between the Youth Forum and the charity Barnardos called the Healthcare Transition Report 2024 to 2025. Beth and Katie are both part of the Youth forum and they tell Lucy what it's all about. The Youth Forum will soon be called the 'NHS Young Researchers.' and will consist of a group of young people aged 16 to 25 who work with NHS England to make sure that young voices are heard. Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Let us know what you think of this episode! We read every comment we receive.In this episode, Lucy sits down with Dr Claire Ashley, author of The Burnout Doctor, to explore what burnout really means, why it happens, and how we can begin to heal from it. Claire shares her personal journey of recovery and the inspiration behind her book. Whether you’re feeling overwhelmed, exhausted, or just curious about how to protect your mental health, this is a conversation you won’t want to miss.You can buy Claire's book at WHSmiths, Waterstones or on Amazon.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Let us know what you think of this episode! We read every comment we receive.For this episode of the podcast Lucy speaks with our new Research Project Manager Megan all about the RDI Lancet Commission on rare disease.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, Lucy talks all about the Role of PAG's in New Born Screening which includes a talk that includes all of the ways that patient advocacy groups have been involved in the UK and globally.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, Lucy chats to Abbie and her Father Steve.Whilst at primary school, Abbie was diagnosed with a very rare brain tumour during the COVID pandemic. Abbie shares her experiences along with Steve about her tumour.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Let us know what you think of this episode! We read every comment we receive.For this episode of The Rare Disease Podcast for Medics, we're sharing a powerful presentation delivered by Lucy at the SOFT UK conference. Lucy introduces the work of Medics for Rare Disease and explores how healthcare professionals can make a real difference to people living with rare conditions.She discusses the importance of embedding rare disease education into medical training, the need for timely and accurate diagnosis, and why excellent care shouldn’t depend on how common a condition is. You can learn more about Rare Diseases by taking our Rare Disease 101 module online now via https://learn.m4rd.org/Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Let us know what you think of this episode! We read every comment we receive.*Please be aware that this episode contains conversations about child loss.*For this week's episode of the podcast, Lucy chats with Nikki Speed from SUDC UK. SUDC UK are a national charity for Sudden Unexplained Death in Childhood, which is a rare category of death which remains unexplained despite a thorough investigation. They help raise awareness of SUDC and help support families affected by it.To find out more about SUDC UK, head to their website https://sudc.org.uk/Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, Lucy speaks to Elle Daniel who is waiting to be the donor of some of her liver to her daughter who is 19 months old. Elle's daughter has a very rare version of a rare condition called Congenital Disorders of Glycosylation (CDG).To find out more about Go Rare, mentioned in the podcast, go to https://www.goraredisease.orgYou can find out more about CDG herehttps://cdg-uk.org/Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare