The Rare Disease Podcast

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 vision last year.Lucy was lucky to catch Indy before she headed to Whistler ...

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 expressed by guests.M4RD receives funding from commercial companies which it wor...

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 accept responsibility for those expressed by guests.M4RD receives funding fro...

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 in this podcast are personal to the individual and Medics4RareDiseases does ...

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 does not accept responsibility for those expressed by guests.M4RD receives fund...

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 partner with communities to elicit change, utilising policy, data and research...

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 a passion for science communication, making science more accessible to the g...

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 and recently sold out Waterstones Picadilly with his book 'Not All Heroes Wea...

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/More information about Cerebra, also mentioned in this podcast can be found here...

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 research and support, with lots more events in the pipeline. Bonnie sha...

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 Chair of Genomics England and Oxford University Innovation. Nicola is also a board member of the biotechnology company BioNTech. Nicola served as Minister for Innovation...

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 ambassador for M4RD.Hope will be performing at The Social in London on March 7th, please visit her social media for tickets.https://www.instagram.com/hopewintermusic/?hl=en-gbViews,...

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 diagnosis was due to a medical student that noticed symptoms on Corrinne's body -which stresses the importance of always being rare aware!Views, ideas and opinions expressed in this podcast ar...

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 UK and Nick Mead, Director for Policy at Genetic Alliance.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept...

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 the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently ...