raredisease

28th April 2022

A REAL Rare Rollercoaster – from Paramedic to Patient

Melissa Clasen interview, patient, Podcast, raredisease diagnosis, doctor, medical education, rare disease, Renal Nutcracker Syndrome, SMA, Superior Mesenteric Artery Syndrome, Wilkie Syndrome

All aboard this ride! This week, on The Rare Disease Podcast 4 Medics, I had the honor to speak to a paramedic, turned patient. Marie was a practicing student paramedic […]

5th April 2022

M4RD joins forces with Bionical Emas to launch new online training

Jo McPherson M4RD, M4RD Learn, medicalstudent, Rare Disease 101, raredisease Bionical Emas, Clinical research, clinical trials, Early access programmes, M4RD, rare disease

Medics4RareDiseases (M4RD) is happy to announce it has collaborated with Bionical Emas, a global Contract Research Organisation, to launch new online training for healthcare professionals. The mini-module is comprised of […]

3rd February 2022

Introducing Phase 3 of the #IAmNumber17 campaign

Jo McPherson daretothinkrare, disease, interview, patient, raredisease Changemakers, Find The One In 17, HCPs, Healthcare providers, I am number 17, rare disease

M4RD is proud to be collaborating on Phase 3 of the I am number 17 campaign in order to reach a vital audience who can make a huge difference to those […]

5th November 2021

Syndromes without a name (SWAN)

Emma Huskinson daretothinkrare, disease, Mystery Disease Monday, Patient Advocacy Groups, raredisease dare to think rare, Diagnostic odyssey, SWAN UK, syndromes without a name, undiagnosed

It’s my first blog post for M4RD and I have been thinking back to when I was first introduced to the field of rare diseases, whilst in Med School. At […]

29th September 2021

Not your usual heart attack

Jo McPherson daretothinkrare, disease, interview, medicalstudent, patient, raredisease, Uncategorised diagnosis, Heart, medical education, patient voice, rare disease, SCAD, Spontaneous Coronary Artery Dissection

Heart attacks may not be rare but SCAD is! Today is World Heart Day and although heart attacks may not be rare, there are other causes of heart attacks that […]

15th September 2021

The impact of living with Myotonic Dystrophy

Jo McPherson disease, Genetics, interview, patient, raredisease diagnosis, dystrophy, genetic, MD, medical education, muscular, myotonic, Myotonic Dystrophy, patient voice, rare disease

Doctors are patients too Genevieve Allum is a 34 year old GP who specialises in Dementia and lives on South Coast with her partner. Genevieve was diagnosed with Myotonic Dystrophy […]

25th June 2021

Reflections on rare diseases: state of the nation 2021

Jo McPherson daretothinkrare, disease, raredisease, Report Baroness Blackwood, Public policy projects, rare disease, reflections on rare diseases, Report, State of the nation

Starting a conversation Back in 2019, Baroness Blackwood spoke at the British Paediatric Surveillance Unit (BPSU) rare disease summer tea party where she stated “we need national debate on rare […]

11th June 2021

Working together to share our message #DareToThinkRare

Jo McPherson daretothinkrare, patient, Patient Advocacy Groups, raredisease collaboration, daretothinkrare, patient advocacy, patient advocates, patient groups, Patients

We believe that asking doctors to #DareToThinkRare is fundamental to improving the experience of all patients living with rare diseases. And to eliminating the diagnostic odyssey. Working together to share […]

2nd June 2021

Thank you to our sponsors for supporting our work programme

Jo McPherson daretothinkrare, Rare Disease 101, raredisease, sponsors collaboration, M4RD, medics4rarediseases, RD101, sponsors, work programme

We would like to thank all our sponsors and donors for their generous support of M4RD’s 2021 work programme that includes further development of Rare Disease 101 and gathering data […]

14th May 2021

Mystery Disease Monday is back #MDM

Jo McPherson daretothinkrare, Mystery Disease Monday, raredisease daretothinkrare, MDM, medical education, Mystery Disease Monday, patient advocacy, raising awarness, rare disease

You spoke and we listened!! We are pleased to announce that Mystery Disease Monday will be back from Monday 17th May and to mark the start of National Eosinophilic Awareness […]