Rare Disease Day 2020
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 […]
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Intracranial Hypotension Symposium 2020 Attendance Bursary
We are delighted to be working with the CSF Leak Association who are currently offering a bursary to support a UK-based junior doctor to travel to, and attend, the 3rd annual Intacranial Hypotension Symposium on 8th February 2020 in Los Angeles.
Interested in studying a childhood rare disease or condition?
Each year the British Paediatric Surveillance Unit (BPSU) invite paediatricians planning a surveillance study to apply for this bursary. The successful applicant receives a free slot on the BPSU Orange […]
30% Project: A Conversation About Baby and Child Death
Same But Different is starting the conversation about baby and child death with their newest exhibit ‘30% Project’. It raises awareness of the statistic that 30% of those diagnosed with a rare disease will die before their 5th birthday.
Medics4RareDiseases becomes a UK Registered Charity
Medics4RareDiseases registered as a UK charity who’s object is the relief of sickness and preservation of health of those suffering from rare diseases.
#DareToThinkRare and Save Lives
The tragic death of Elliot reminds us that knowing about rare diseases doesn’t just improve the patient journey but it can save lives in emergency situations. Find out more about Elliot and urea cycle disorders.
The Changing Face of Fibromuscular Dysplasia
Our understanding about fibromuscular dysplasia is evolving. Find out more about this under-diagnosed and serious condition from Dr Tina Chrysochou, Consultant Nephrologist.
How one medical student learned to #DareToThinkRare
History, Examination, Investigation, Diagnosis…?
I must admit that, until recently, I hadn’t really given much thought to the issues surrounding rare diseases. When studying for exams, I dutifully learnt what I thought were all the steps in managing various conditions.
M4RD Welcome a New CEO
Dr Lucy McKay becomes the new (and first ever) Chief Executive Officer of Medics4RareDiseases.
The M4RD Red Flags Survey Launches Today!
Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey. The purpose of the survey is to find out what different rare diseases have in common during the time before diagnosis, a period often called ‘the diagnostic odyssey’. We need all UK based patient groups to take part. Read more to find out how…