patient

30th January 2024

Breaking the Medical Preconception on Rare Diseases by Rebecca Giddings

Many people with a rare disease will tell you that it took years to get diagnosed, with an average time for diagnosis taking between 4 and 6 years. During this […]

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 […]

30th March 2022

Fifty Years For a Fibular Hemimelia Diagnosis

Melissa Clasen interview, M4RD, patient, Podcast congenital, diagnosis, fibula hemimelia, medical education, rare disease

Fibular Hemimelia is a rare congenital condition characterised by the complete or partial absence of the fibula bone. It is the same condition which afflicted athletes Aimee Mullins and Oscar […]

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 […]

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26th November 2021

Become an M4RD Ambassador and a Rare Disease Ally

Jo McPherson Ambassador, daretothinkrare, doctor, M4RD, medicalstudent, patient Ambassador, Clinical Ambassador, doctor in training, M4RD Ambassador, medical student, Patient Ambassador, rare disease

Our Ambassador Programme is now open to new applications – this is your chance to become an M4RD Ambassador and a rare disease ally! About our programme Our ambassador programme […]

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 […]

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 […]

25th March 2021

I am number 17 campaign

Jo McPherson daretothinkrare, disease, interview, patient, raredisease I am number 17, Occipital horn syndrome, OHS

This week changemaker David Rose speaks with our CEO Lucy about what it is like to live with the ultra-rare disease occipital horn syndrome, advocacy efforts and the I am number 17 […]

18th June 2020

New Online Tool for Assessing COVID-19 Risk in People With Rare Genetics Diseases

Jo McPherson COVID19, daretothinkrare, disease, doctor, Family support, patient, Research, Uncategorised COVID19, online tool, rare disease

UCL Great Ormond Street Institute of Child Health has responded to the considerable anxiety and confusion among many people living with rare diseases about their level of risk from COVID-19 and the […]