A landmark resolution on rare disease
Last week a landmark resolution on rare disease was adopted at the 78th World Health Assembly. This marks a significant step toward global health equity and inclusion. The Resolution was […]
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Calling on ALL healthcare teams – show your stripes for Rare Disease Day!
Calling all healthcare professionals… dig out your stripey socks and get ready to ‘show your stripes’ as we approach Rare Disease Day on 28th February. Medics for Rare Disease is […]
My time working for Medics4RareDiseases by Nadine Jefferies
After an incredible year and half, I have decided to move on from working at Medics4RareDiseases. But before I go, I’d like to look back on my time at this […]
Gallery: First, do no harm – Reflections on a rare bone disease
Medics4RareDiseases and FOP Friends, in collaboration with the Hunterian Museum at the Royal College of Surgeons of England, hosted an evening reception for healthcare professionals, examining the contributions of patients […]
Get Ready to #ShowYourStripes for Rare Disease Day – 29th February!
Join Medics4RareDiseases (M4RD) and #ShowYourStripes for Rare Disease Day on 29th February, the rarest day of the year. Getting involved is easy, simply dig out some stripey socks, pop them […]
‘Where are our nation’s donors?’ Parliamentary Launch Event by Nadine Jefferies
Last week myself and Dr Grace Knight, clinical ambassador for M4RD, got the chance to attend the All-Party Parliamentary Group (APPG) launch of the report ‘Where are our nation’s donors?’, […]
Mystery Monday: Have you heard of DHDDS-related conditions?
Have YOU heard of DHDDS-related conditions? This week Mystery Monday is focusing on the gene known as DHDDS and its role in cases of ataxia, cerebellar and neurodevelopmental conditions. Thank […]
Mystery Monday: Have you heard of Osteogenesis Imperfecta?
This week Mystery Monday is focusing on Osteogenesis Imperfecta! Thank you so much to Osteogenesis Imperfecta Federation Europe (OIFE) for the fantastic resources! Be sure to stay in the loop […]
CMTC – More Than Just a Bruise
by Nadine Jefferies The moments after a baby is born – already a rollercoaster of emotions for any parent –are only amplified if your baby has a rare condition. Lex […]
Mystery Monday: Have you heard of Porphyria?
Have YOU heard of Porphyria? This week Mystery Monday is focusing on Porphyria! Thank you so much to the British Porphyria Association for the fantastic resources! Be sure to stay […]