The Rare Disease Podcast 4 Medics

Medics4RareDiseases

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. read less

Health & FitnessHealth & Fitness

Play Trailer

Episode 0: What's coming up in season 3?

Episode 0: What's coming up in season 3?

Lucy introduces the newest season of The Rare Disease Podcast 4 Medics with the help of Melissa. We give some teasers about interviews that will be coming to you this season including episodes about supportive care for newborns, mental wellbeing in sickle cell disease, misconceptions in Huntington's disease and a pair of siblings talking about Addison's disease.Thank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.Medics4RareDiseases is a charity registered in England and Wales (1183996). The charity is financially supported by commercial partners. Some of these companies are pharmaceutical companies. The charity works independently from these companies who have no editorial control over this content or any of the charity's activities. Learn more.The Student Voice Prize is open for submissions! Until 16th November. Check out the three questions now and if you need a patient advocate to speak to make sure you apply to patient group pairing scheme.LinksThe Association of the British Pharmaceutical IndustryThe ABPI Code of PracticeRAREFest 2022 come watch the Rare MonologuesGrace's blog about rare disease and the emergency department Give Blood, Spread Love, EnglandHuntington's in MindViews, 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

Episodes

Psychosocial Care - Enhancing Medical Care to be Psychologically Informed

Psychosocial Care - Enhancing Medical Care to be Psychologically Informed

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 healthy toolkit.'This week is European Mental Health Week and this session will start a co-creation process to develop a new Mentally Healthy Toolkit for the rare disease community, by exploring the existing best practices and tools that can be drawn on and scaled to form the basis for a new Toolkit. As well as providing concrete policy solutions that can support the implementation of the UN commitment into national healthcare systems.Lucy will be speaking at the Opening Plenary at 8.30am (BST) and again for her mental health panel at 1pm (BST)ECRD takes place between the 15-16th of May 2024. All tickets for the event are sold out in person, but you can buy tickets to watch online here - https://www.rare-diseases.eu/register/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's talk medical communications! with Emotive

Let's talk medical communications! with Emotive

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 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

Rare Disease 101 with Lucy McKay from the RSM 2024

Rare Disease 101 with Lucy McKay from the RSM 2024

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 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

Think Ammonia with Metabolic Support UK

Think Ammonia with Metabolic Support UK

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 to develop creative campaigns with measurable goals to ensure action is taken to improve the lives of people living with inherited metabolic disorders.If you would like to find out more about Metabolic Support UK, check out their website https://metabolicsupportuk.org/who-we-are/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

M4RD x Big Bang Theory with our Patient Ambassador Daval

M4RD x Big Bang Theory with our Patient Ambassador Daval

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 general public, Daval has joined Medics for Rare Diseases as an ambassador to raise awareness of EBS, not just in the medical field, but also in the general public. Lucy and Daval discuss what happened to Pluto, best quotes from Jurassic Park and rare skin disorders. Daval works with the charity, DEBRA UK, in an effort to improve the quality of life of not just patients with EB, but also people living with other rare conditions. If you would like to learn more about DEBRA UK, you can visit their website here https://www.debra.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

Words Matter with Jono Lancaster from The Unusual Suspects 2024

Words Matter with Jono Lancaster from The Unusual Suspects 2024

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 Wear Capes'.Listen back to Jono's inspirational talk now.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

My son with PTEN with Kelly Kearley from PTEN UKI

My son with PTEN with Kelly Kearley from PTEN UKI

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 https://cerebra.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

Think Rare, Think Genetics with Bonnie Jackson

Think Rare, Think Genetics with Bonnie Jackson

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 shares her journey so far and how she has been supported by Annabelle's Challenge Vascular EDS Charity.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

Baroness Nicola Blackwood on Politics and Patient Care

Baroness Nicola Blackwood on Politics and Patient Care

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 in the Department of Health and Social Care under two prime ministers, where she led on life sciences, NHS data and digital transformation, and global health security.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

Special Episode: Hope Russell-Winter from The Voice UK

Special Episode: Hope Russell-Winter from The Voice UK

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, 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

How a medical student saved my life and my experience of Addison's Disease with Corrinne Hepworth

How a medical student saved my life and my experience of Addison's Disease with Corrinne Hepworth

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 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

What exactly is Newborn Screening?

What exactly is Newborn Screening?

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 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

The Rare Youth Monologues - USA Edition

The Rare Youth Monologues - USA Edition

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 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

What's it like working for a rare disease charity? with Rick Thompson

What's it like working for a rare disease charity? with Rick Thompson

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 like working for a rare disease charity and what drives him to work for the charity.You can find out more about Beacon by visiting their website at https://www.rarebeacon.org/Find out more about The Student Voice Prize by visiting https://www.rarebeacon.org/student-voice-prizes/the-student-voice-prize-2023/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

MPS Hunter Syndrome with Daniella Vandepeer

MPS Hunter Syndrome with Daniella Vandepeer

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 worked in HIV advocacy and has served as a trustee for the MPS Society.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

ALK-Positive Lung Cancer and Me with Debra Montague

ALK-Positive Lung Cancer and Me with Debra Montague

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 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

Young-Onset Parkinson's - a laughing matter?

Young-Onset Parkinson's - a laughing matter?

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 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

Melbourne to Manchester - a clinical trial story

Melbourne to Manchester - a clinical trial story

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 families who live with rare conditions.This particular episode of the podcast is dedicated to the memories of Jackson Whitaker and Professor Ed Wraith. Both of them were unique and wonderful characters and inspired much of the work at Medics4RareDiseases. 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

In the shoes of a Clinical Nurse Specialist with Tanya Gill

In the shoes of a Clinical Nurse Specialist with Tanya Gill

For this week's episode Lucy is speaking with Tanya Gill, who has just started a new role as a pediatric matron for surgical services at a hospital in London. However, her majority of experience has been as a clinical nurse specialist in a metabolic service for children. Tanya is passionate about breaking down the barriers in the medical world, so has a lot in common with Medics 4 Rare Diseases.We discover more about her experience over the years and what expected of a Clinical Nurse Specialist.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

Rareminds – Let's talk about mental health with Kym Winter

Rareminds – Let's talk about mental health with Kym Winter

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 patient leaders in making mental health integral to rare disease patient care.In this episode we explore why mental health should be at the centre of patient care and how medics can open conversations on mental health, how to signpost and access further support an how medics can take care of their own mental health so that you can continue to offer great care and support in the clinic. Find out more about Rareminds and what they do here: www.rareminds.orgViews, 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