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 welcomes back our ambassador Daval Amratlal to review the book Flowers for Algernon by Daniel Keyes. Algernon is a laboratory mouse who has undergone surgery to increase his intelligence. The story is told by a series of progress reports written by Charlie Gordon, the firs...

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 Malone Mukwende who is the founder of the platform BlackandBrownSkin. After his arrival at medical school, Malone became acutely aware of the lack of clinical teaching provided about conditions as they appear on patients with darker skin. This lead him to writ...

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....

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 an...

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...

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...

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...

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 therap...

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 po...

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, ide...

Let us know what you think of this episode! We read every comment we receive. In anticipation of the 2024 ECRD conference in Brussels, our CEO Lucy McKay and CEO of RareMindsUK Kim Winter took part in this podcast to spark your curiosity and deepen your understanding of the topics that will be explored during their panel 'No Health Without Mental Health! Let's co-create a mentally health...

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 y...

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....

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 s...

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...

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 t...

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 au...

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 i...

Let us know what you think of this episode! We read every comment we receive. Welcome to the brand new season of the The Rare Disease Podcast for Medics! To kick off the season, we have the wonderful Baroness Nicola Blackwood who speaks to us all about Ehlers-Danlos, patient care and her work in politics. Nicola is a leader in science and entrepreneurship. She is a member of the House of Lords and...

Let us know what you think of this episode! We read every comment we receive. This week's episode is a special one-off episode before the launch of Season 6 this March! Lucy speaks with our ambassador Hope Russell-Winter who was a recent runner up on The Voice UK! Hope tells us all about her experience with Multiple Endocrine Neoplasia type 1, her time on the Voice UK and why she is an ambass...

Let us know what you think of this episode! We read every comment we receive. For the last podcast episode of the season and the last episode Mel will be featuring on as a host - Mel spoke with Corrinne Hepworth who is an M4RD ambassador - who was also diagnosed with Addison's disease. Addison's Disease is a rare and life threatening form of adrenal insufficiency.  Corrinne's diagno...

Let us know what you think of this episode! We read every comment we receive. For this year's episode of the podcast Lucy speaks with a panel at this years Rare Summit all about The NHS Newborn Screening Programme - what is it and how is it evolving? Joining Lucy is Dr David Elliman, the Clinical Advisor for the Newborn Screening Commitee and the Blood Spot Task Group, Giles Lomax, CEO of SMA...

Let us know what you think of this episode! We read every comment we receive. For this week's episode of the podcast, we hear from Courtney, Evan and Jessie as they give their Rare Youth Monologues with Lucy.  Hear their inspiring stories and listen afterwards to a great discussion about the process with our host Lucy McKay. Views, ideas and opinions expressed in this podcast are personal to...

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 Rick Thompson who is the CEO of the charity Beacon for Rare Diseases. He was the charity's third member of staff until he was promoted in 2017 and has written articles, given talks and provided training across the European rare disease community. Beacon a...

Let us know what you think of this episode! We read every comment we receive. For this week's episode of the podcast, we're joined by Daniella Vandepeer, who is a mother to Caleb who has a diagnosis of MPS II Hunter Syndrome.  Daniella is also currently busy furthering her career and studying nursing and midwifery.  She has a wealth of experience and expertise and has also previously wor...