The Rare Disease Podcast

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 with Grace Knight, who is one of our ambassadors working as a junior doctor and is back for her second podcast with us. She got involved with M4RD when her brother was diagnosed with a rare disease, which changed her perspective of diagnosis and patient experience.Lucy and Grace talk through the NICE (National Institute of Clinical Excellence) guidelines and discuss...

Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, and to highlight Mental Health Awareness Day, our guest is Kym Winter, the CEO from Rareminds.Rareminds is the first specialist, non profit, rare disease counselling and psychotherapy service in the UK (and possibly globally). The team has been providing online counselling and wellbeing services for rare disease charities since 2014.Kym and Lucy chat about mental health and vic...

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 with our ambassador Dr Beth Meek and singer/songwriter David Hick who were both recently featured with M4RD in The British Medical Association’s magazine ‘The Doctor’.You can listen to David’s track ‘The Light’ featuring his friend Jo Logue, who also has Becker MD, at the end of the podcast. Or to hear more from David, search ‘David & the Devil’ on Spotify.Read ...

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 with Emma all about why Disneyland is more inclusive than society and Colin Farrell's recent interview where he talks about his son's rare condition Angelman Syndrome.Angelman Syndrome is a rare genetic condition that effects the nervous system and causes severe physical and learning disabilities.To find out more, visit https://www.angelmanuk.org/ and to watch the fu...

Let us know what you think of this episode! We read every comment we receive.Celine Dion was diagnosed with Stiff Person Syndrome in 2020. Lucy chats with our trustee Dan Jeffries and our amabassador Emily Livesey to discuss their thoughts on her new docufilm and discuss how relatable (and unrelatable) Celine Dion's experiences are.You can watch 'I am: Celine Dion' on Amazon Prime.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does n...

Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, Lucy speak's with Indy about skiing, art and disability. Indy is one the teachers at Stagecoach, who put on performing arts workshops for children.She lives with a condition called Oculofacialcardiodental Syndrome and is registered blind. Indy and Lucy discuss the therapeutic power of art as Indy shares how her degree in Creative Expressive Art helped her grieve the loss of her...

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 two-time Paralympian and M4RD ambassador Kim Daybell all about his thoughts on the Olympics, Paralympics and Disability in Society.Kim has a rare disease called Poland Syndrome and is also an ambassador for PIP UK.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those exp...

Let us know what you think of this episode! We read every comment we receive.Welcome to the new season of The Rare Disease Podcast for Medics!We're on season 7 now, how did that happen?!For the first in the new series, our CEO Lucy and comms manager Emma chat about M4RD's upcoming plans for our Rare Disease Day sock campaign and reminisce over their time at medical school. Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not ...

Let us know what you think of this episode! We read every comment we receive.For this week's podcast, our communications lead Emma Huskinson hosts a one-off episode with Emma Macleod and Charlotte Roe who work for our communications agency Emotive.They chat all about why they made the move to medical communications, what it means to be involved for them and what Emotive are here to do. If you would like to learn more about Emotive, visit their website. Views, ideas and opinions expressed...

Let us know what you think of this episode! We read every comment we receive.3.5 million people in the UK live with a rare condition, which is a global point prevalence of 3.5 to 5.9%. In the UK that number equates to approximately the number of adults living with asthma.For this week's episode of the podcast we listen back to Lucy's Rare Disease 101 talk from the RSM in February 2024.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases do...

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 Jonathan Gibson who works as the Policy and Public Affairs Officer for Metabolic Support UK. His background is in genetics and global health and he’s also worked for the NHS within a busy biomedical science laboratory for over four years undertaking the analysis of samples to ensure you receive the right treatment and diagnosis.Within MS UK activist and key p...

Let us know what you think of this episode! We read every comment we receive.For this week's episode of the podcast, Lucy is joined by Daval Amratlal, who is one of our patient ambassadors and has a rare skin condition called Autosomal Recessive Epidermolysis Bullosa Simplex. EBS is a rare skin condition where blistering is caused by trauma to the skin. Daval graduated in 2021 with a BSc in physics with space science and started an MSc in Planetary Science in September 2023 at UCL. With...

Let us know what you think of this episode! We read every comment we receive.It's been 10 years since Medics4RareDiseases first hosted The Unusual Suspects at The Royal Society of Medicine in association with the Medical Genetics section. It's amazing to see how far we have come over the years!This year, we had a varied line-up of speakers that gave thought provoking talks throughout the afternoon and one of them was public speaker and author Jono Lancaster, who has Treacher Collins Syndrome ...

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 with Kelly Kearley who is the charity manager for PTEN UKI.Kelly's son Austin was diagnosed with P10 harmatoma tumour syndrome. Hamatoma Tumor Syndrome, or often shortened to P10, is a rare genetic condition. And it causes multiple cancers in adulthood and autism in childhood.You can find out more about PTEN UKI by visiting their website https://ptenuki.org/Mor...

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 with Bonnie Jackson who is the London Regional Coordinator at Annabelle’s Challenge Vascular EDS Charity, who are the leading charity for Vascular Ehlers-Danlos syndrome in the UK.Her daughter Mia was diagnosed with Vascular EDS in August 2021 after 7 years. Mia is now 9 years old and in 18 months both her and the charity have raised over £62,000.00 for Vascular EDS...