Medics 4 Rare Diseases: A day in the life of a medical student during the pandemic.
Written by Chloe Bell, a fourth-year medical student at the University of Manchester.
Chancellor urged to level up local authority finances to help England’s poorest children, National Children’s Bureau, 2020.
“Chancellor urged to level up local authority finances to help England’s poorest children”
Ask The Minister
The Council for Disabled Children has published a Q&A between its members and Children and Families Minister Vicky Ford on the Government review of SEND support. Ask the Minister: SEND Review Q&A | Council For Disabled Children
JOIN A VIRTUAL BALLOON RACE: RAISE FUNDS FOR RACC-UK🎈🎈🎈🎈🎈🎈
Buy a balloon (or several) in an imaginary, computer-simulated, balloon race which “launches” outside Harrods in London on 1st December. Track your balloon on maps for a week to see if you win – it’s great fun even if you don’t. Balloons cost £3, of which £2.35 goes to RACC-UK (the rest to the company […]
‘The abilities in me’ book series, by Gemma Keir
Series of books available on Amazon suitable for children between the ages of 3 – 8 years old. After the diagnosis of her son with 22q deletion, Gemma wrote her first book to help raise awareness of the condition and help other children to understand. Since then, Gemma has teamed up with other families in […]
BPSU study – Chronic recurrent multifocal osteomyelitis/ chronic nonbacterial osteomyelitis (CRMO/CNO) [2020]
“Surveillance of chronic recurrent multifocal osteomyelitis/chronic nonbacterial osteomyelitis (CRMO/CNO) commenced in October 2020. It is being led by Dr Chenqu Suo and Dr Kate Armon from the Cambridge Unviersity Hospitals. This study intends to find out how common CRMO/CNO is, and who is involved in the care of CRMO/CNO patients. This will help to guide […]
Why the charity was born
Although I have been symptomatic since birth with multiple admissions and surgeries, I did not receive my diagnosis until I was 16 years old. Yes, 16 years old. I remember that day. My Mum had just given birth to my baby brother, I was preparing for my school exams. A letter arrived in the post. […]
Featured in: Health Europa
Understanding rare autoinflammatory conditions during awareness month 24th September 2020 Thank you to Stephanie at Health Europa for this amazing opportunity to raise awareness!
Kindle Edition: FMF Super Heroes
FMF Super heroes by Megan Bryant (2018) “Aria is 6 years old and goes to kindergarten. She likes animals, dancing, camping and playing. Aria has not been feeling good for a long time. Every time Aria hurts, her mommy feels her head to see if she has a fever. A fever means that Aria’s body gets […]
Recurrent Idiopathic Pericarditis – Patient Experience 1
“I was first afflicted with Pericarditis (inflammation of the pericardium the membrane that surrounds the heart) seven years ago. My cardiologist suspects that it was triggered by an unknown virus. The primary symptom was intense chest pain. Pericarditis was confirmed by CT and echocardiogram scans. Those identified a thickened pericardium together with large effusions (Fluid […]