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 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

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 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

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 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

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 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

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 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-gb

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 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

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 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

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 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 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

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 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