disease

4th November 2024

Beyond the Diagnosis: Mental Health and Rare Diseases

m4rd Ambassador, disease M4RD, medical education, medical student, rare disease

For millions with rare diseases, the journey to understanding and managing their condition can be as challenging as the diagnosis itself. Rare diseases are more common than many realise – […]

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1st February 2023

7 Ways you can gear up for Rare Disease Day on February 28th 2023

Eleanor Churchill disease, event, M4RD Events, Rare Disease Day, raredisease, Uncategorised events, M4RD, rare disease day

Rare disease day highlights the impact of rare disease on millions of people all around the world. There’s loads of ways you can get involved to support this incredible day, […]

2nd November 2022

Large Vessel Vasculitis

Mariam Al-Attar Ambassador, disease doctor in training, large vesel vasculitis, rare disease, research, Rheumatology, Vasculitis

Dr Mariam Al-Attar is currently a Internal Medical Trainee doctor at Northern Care Alliance. She graduated from Lancaster University where she held a number of positions that make her qualified […]

19th May 2022

It’s not ‘just hypermobility’

Melissa Clasen daretothinkrare, disease, M4RD, Mystery Disease Monday, Patient Advocacy Groups, Podcast, raredisease Annabelle's Challenge, Ehlers Danlos, genetic, Hypermobility, M4RD, VEDS

Ehlers Danlos Syndrome (EDS) refers to a group of conditions that affects connective tissues, which includes skin, bones, blood vessels and many other organs. Symptoms of Ehlers Danlos Syndrome can […]

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 […]

15th July 2021

Rare Disease 101: How it all began

danjeffries daretothinkrare, disease, Rare Disease 101 doctors in training, interactive course, M4RD, medical students, medics4rarediseases, online medical education, Rare Disease 101, RD101

The idea behind Rare Disease 101 When the idea of Rare Disease 101 was first mooted by Lucy McKay, my (slightly wonky) heart skipped a beat. I had been a […]

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 […]