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For this week's episode of the podcast, Lucy invites the M4RD team on with her to discuss this year's highlights for the charity and the exciting plans we have for 2025!
We would like to take the opportunity to say a massive thank you to all of our listeners. Our podcast has grown so much over this past year and it's only because of you! From everyone at M4RD, we wish you a very Merry Christmas and a Happy New Year!
We will be back for a few exclusive episodes in January 2025, with our new season officially starting in February 2025.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 us know what you think of this episode! We read every comment we receive.
For this week's episode of the podcast, Lucy and our ambassador Maddy speak to the author James Melville Ross all about his book 'Two for Joy'.
'Two for Joy' is the heart-warming true story of disabled twins Thomas and Alice, and their desperate fight for life after being born four months prematurely. James Melville-Ross, their father, tells of how the twins not only survived - despite being given the last rites as babies - but also thrived.
If you would like to read the book you can do so here https://www.awesomebooks.com/book/9781786060105/two-for-joy/used?gad_source=1&gbraid=0AAAAADocATC_xLpb1kozsBtATtfdVV_kN&gclid=CjwKCAiAmMC6BhA6EiwAdN5iLb0OIxe4YI-6LcGdqksxE86nl1RGJmynVelGqXqwD9GgZ2MX4qJDBRoCcrMQAvD_BwEViews, 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 -
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For this week's episode of the podcast, Lucy reviews the documentary Bombardier Blood with our trustee Dan and our ambassador Emily.
Bombardier Blood is all about a man called Chris Bombardier who is on a mission to become the first person with severe haemophilia to climb the Seven Summits, the highest mountain on each continent. He has completed five of the climbs already, but the next faces the big one: Everest.
If you would like to watch the film, you can watch on Amazon or for free on YouTube.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 us know what you think of this episode! We read every comment we receive.
For this week's episode of the podcast, we need YOU to listen to find out why you should take part in a very important survey!
Lucy and Emma will be discussing The Rare Disease Quality Statements Survey. The aim of the survey is to develop a set of quality statements for what good care looks like in rare diseases.
The survey is open to anyone who has a rare disease, is a family member or carer of someone with a rare disease, including charities and health professionals. Please bear in mind, the survey is to be completed by over 18s – if you are under 18, you must ask a parent or carer to complete the survey on your behalf.
To take part in the survey head to https://www.research.net/r/RPBN59Y 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 -
Let us know what you think of this episode! We read every comment we receive.
For this week's episode of the podcast, Helen our training programme manager takes over as host to speak with Mariette Kono, who is a medically retired occupational therapist who lives with Stiff Person Syndrome.
Mariette talks all about her experiences about being diagnosed from the perspective of someone with a healthcare background.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 us know what you think of this episode! We read every comment we receive.
This week's episode of the podcast is a slightly shorter one, and this time, Lucy is the guest along with Dr Agatha, one of M4RD's ambassador's and a recent graduate from the University of Glasgow as well as being an academic foundation doctor in Newcastle.
They are both being interviewed by Y2 medical students from The University of Glasgow all about how they both got involved in their work and how people can help raise awareness about rare diseases.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 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 first human subject for the surgery, and it touches on ethical and moral themes such as the treatment of people with mental disabilities.
Daval and Lucy the parallels between the book and those living with rare diseases.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 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 write the handbook 'Mind the Gap', a clinical handbook of signs and symptoms in Black and Brown skin.
Listen to what Malone had to say about his journey so far and how he feels about his work being picked up by the likes of Sky News and the Washington Post.
To download 'Mind the Gap' visit the website here.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 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 what has already been changed and what could be changed.
If you would like to listen to Grace's original episode, search 'Dr Grace, brother Eddie, Addison's Disease and ED'.
If you would like to download the handbook 'Mind the Gap - A handbook of clinical signs in Black and Brown skin', you can do so here https://www.blackandbrownskin.co.uk/mindthegapViews, 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 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 victim blaming at work.
To take part in the Rare Disease and Mental Health module mentioned in the podcast, head to M4RD Learn.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 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 the full article discussed in this episode here
https://thedoctor.bma.org.uk/articles/health-society/finding-the-zebra/
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 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 full interview with Colin Farrell, head to YouTube https://www.youtube.com/watch?v=JDiD8Z3lWQk&t=74s
Read the GeNotes on Angelman Syndrome here https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/angelman-syndrome/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 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 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 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 vision last year.
Lucy was lucky to catch Indy before she headed to Whistler for a ski season with The Whistler Adaptive Ski and Snowboard Program. Indy will be training the trainers in assisting visually impaired skiers.
Listen out for the tiny voice of Lucy's daughter :)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 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 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 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 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 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 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 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 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 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 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 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 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 - もっと表示する
