rare disease

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 […]

25th June 2019

Medics4RareDiseases becomes a UK Registered Charity

Lucy McKay Uncategorised Charity, Charity Commission, Diagnostic odyssey, funding, fundraising, health, healthcare, medical education, medical school, rare disease, sickness, sponsorship

Medics4RareDiseases registered as a UK charity who’s object is the relief of sickness and preservation of health of those suffering from rare diseases.

19th June 2019

The Manchester Rare Disease Showcase

Jo McPherson advocates, medical student, Networking, Patients, rare disease, Showcase 0

Join Findacure for The Manchester Rare Disease Showcase – a day long conference celebrating rare disease developments in Manchester and North West England.

19th June 2019

The Cambridge Rare Disease Showcase

Jo McPherson medical student, Networking, Patients, rare disease, Showcase 0

Join Findacure for the annual Cambridge Rare Disease Showcase – a relaxed and informal networking evening in one of the UK’s most prominent scientific hubs.

6th June 2019

RAREsummit19

Jo McPherson Cambridge, medical education, patient, rare disease 0

RAREsummit19 is a 1 day summit focusing on patient centricity in rare disease – mastery, opportunities and trends in the drug development process, healthcare and assistive technologies.

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6th June 2019

Health Horizons: Future Healthcare Forum

Jo McPherson Cambridge, healthcare, rare disease, technology, therapies 0

CRDN are hosting a Rare Disease session as part of the new Cambridge Biotech Week Health Horizons Forum.Health Horizons is a high calibre, two-day conference focusing on the future of the healthcare industry. Created by the Global Innovation Forum.

2nd June 2019

The Diagnostic Odyssey – A Mother’s Experience

Jo McPherson congenital, daretothinkrare, disease, interview, patient CSID, Deficiency, diagnosis, Diagnostic odyssey, Diet, Enzyme, Enzyme deficiency, Gastroenterology, Mother, Nutrition, rare, rare disease, Rare reality, Sugar

The diagnostic odyssey is a term used to describe the long and arduous journey that many rare disease patients find themselves on in pursuit of a diagnosis. The charity, Rare […]