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Interviews with patients, clinicians, advocates, students, researchers focusing on rare disease in clinical medicine. This podcast is brought to you by Medics4RareDiseases who are asking medical professionals to #daretothinkrare in order to improve diagnosis, clinical care and research in this neglected but really important field of medicine. 350 million people in the UK live with a rare disease so while each disease is individually rare, together rare diseases are common.
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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 ...
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 also works together with Medics4RareDiseases on the Student Voice Prize which is open for entries until November 15th 2023. Rick chats to Lucy about the history behind Beacon, what its lik...
For this episode of the podcast, Melissa spoke with Debra Montague, founder of the ALK Positive UK charity.Deborah is also a survivor of ALK Positive lung cancer and spoke with Melissa about the misconceptions surrounding it and her experiences.ALK Positive lung cancer is a rare lung cancer and the majority of people who are diagnosed with it are non-smokers. Half of them are also under the age of 50.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics...
You gotta fight for your right to PARKY!Phil is an amateur stand-up comedian from Birmingham who was diagnosed with Young Onset Parkinson’s Disease at the age of 36. Phil shares the lighter and more ridiculous parts of his condition through his comedy and regularly performs gigs around the country.Phil chats to Lucy about his diagnosis, what it's like to have Young-Onset Parkinson's and his passion for comedy.Views, ideas and opinions expressed in this podcast are personal to the individual a...
Today's episode of the podcast is a special one as Lucy is joined by an old friend of hers, Xanthe Whittaker. Xanthe is a university lecturer and Mum to Jackson who passed away in May, 2014. They came into each other's lives when Lucy was a teenager through her son Jackson, who lived with a rare metabolic condition called MPS II or Hunter Syndrome. Xanthe and Jackson's story of how they came to be in the UK is extraordinary and really exemplifies the strength and courage and tenacity of...
Melissa is joined by Kym Winters, the founder of charity organisation Rareminds and psychotherapist, to discuss the impact rare disease has on mental health and what support for mental health can look like for individuals, families and medics. Rareminds is a not-for-profit Community Interest Company (CIC) and the organisation has been providing online counselling, therapy and wellbeing services for rare disease charities since 2014. They do amazing work and they support professionals and pati...
For this week's podcast, Melissa speaks with Angela Cornwall who is a parent carer for her daughter Natalie, who lives with a rare condition called Diamond-Blackfan Anemia. Angela has used her experiences and wealth of information to create solutions to not only help her own family, but as many people as possible.Diamond-Blackfan Anemia is a rare condition that primarily affects the bone marrow, but people with this condition can also have other physical abnormalities affecting various parts ...
For our next guest on the podcast, Melissa speaks to Pam Slater who is a devoted rare parent and verbal dyspraxia advocate.Pam became involved with the rare disease community because she has a daughter who was diagnosed with FOXP2 which is a condition that affects the development of speech and language.As Pam learnt more about the condition and how to support her, she also became more involved in raising awareness about the condition.Hear what Pam had to say to Melissa in this week's podcast....
For this week's guest, Lucy interviews Jono Lancaster, who is an author and public speaker who has a condition called Treacher Collins Syndrome. It is a rare congenital condition that causes facial bones to develop asymmetrically. Having struck up a relationship with Fearne Cotton, Jono has been featured on her Happy Place podcast, which has led to the idea to publish his own book, 'Not all Heroes Wear Capes' released later this year, all about finding self-love and accepting yourself. Throug...
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