rare disease

18th August 2020

The Unusual Suspects 2020 – Rare diseases in everyday medicine

Lucy McKay conference, daretothinkrare, M4RD Events, Video clinicians, diagnosis, doctor, doctors in training, event, medical student, rare disease, rsm, symposium, the unusual suspects

In February 2020, a month before lockdown in the UK, we held our annual symposium at The Royal Society of Medicine for the sixth year. ‘The Unusual Suspects: Rare diseases […]

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 […]

16th April 2020

Fizzy’s SwimRun for Rosie

Lucy McKay fundraising, raredisease, Uncategorised australia, Fizzy, fundraising, Lucy mckay, rare disease, Rosie, Swimrun, Thyroid cancer

The Challenge For months Fizzy Keeble and her partner, Mike, have been training in preparation for this Saturday. The challenge? SwimRun Australia – a unique and challenging adventure sport where […]

29th February 2020

Rare Disease Day 2020

Jo McPherson raredisease, Uncategorised awareness, diagnosis, doctor, doctors in training, foundation doctors, medical education, medical school, medical student, rare disease, rare disease day

On this rare day take time to listen to a patient story and decide what you will do to make a difference to 300 million people living worldwide with a […]

22nd January 2020

The 10th European Conference on Rare Diseases & Orphan Products (ECRD)

Jo McPherson clinicians, patient advocacy, policy makers, rare disease, research, stakeholders 0

People living with a rare disease have the right to reach their highest potential of well-being; join us online for ECRD 2020 to take part in discussions to inform and build the future ecosystem for rare disease policies and services.

2nd October 2019

Rett UK Regional Professionals Day

Jo McPherson GP, OT, professionals, rare disease, Rett syndrome, SLT 0

Great opportunity to learn more about Rett syndrome and how to support people with the disorder

2nd October 2019

A Puff of Smoke

Jo McPherson disease, event, patient book launch, event, exhibition, patient, rare disease, workshop

Sarah Lippett spent eleven years suffering with symptoms from an unknown condition, until she was diagnosed with the rare disease, Moyamoya, at the age of 17. This November she is […]

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12th August 2019

‘The Suspense is Killing Me’ is launched to help find answers for children suffering from rare or undiagnosed diseases.

Jo McPherson daretothinkrare, disease, Family support, patient, raredisease, Research children, Family support, rare disease, undiagnosed

Project Y’s mission is to find answers for children with rare diseases, helping to find answers for thousands of families who desperately need them. Project Y supports advancing initiatives such […]

10th August 2019

The 33rd symposium: Cystic fibrosis in children and adults

Jo McPherson patient, rare disease, symposium 0

This unique and multi-specialist event will look at and teach paediatricians how to be vigilant and confident when diagnosing masked and irrelevant signs and symptoms of illness or disease.

15th July 2019

Childhood Tumour Trust Appoints New Medical Advisory Board Members

Jo McPherson Ambassador, conference, medicalstudent, raredisease medical student. medical advisory board, neurofibromatosis, NF1, rare disease, volunteer

Earlier this year M4RD helped Childhood Tumour Trust (CTT) search for a doctor to attend the International Neurofibromatosis Conference in San Francisco this September. The successful applicant would also join CTT’s medical […]