SURVEY: Do you have a child with a rheumatic and/or auto-inflammatory disease?
ENCA are conducting a short anonymous survey about vaccinations for children with rheumatic and/or autoinflammatory conditions.
5 things to know about parenting a child with a rare disease
A great article where Omaira Gill shares her personal experience of the five things to know about parent a child with a rare disease. She goes into detail and gives hope and advice to any parent with a child suffering from a #RareDisease.
Our Chair invited by Novartis to Spain
Autoinflammatory UK’s Chair invited to Valencia in Spain by Novartis to share with professionals in the medical and pharmacological field first hand experience of the patient journey for people suffering from rare autoinflammatory disease.
RAREsummit19
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.
Organised by Cambridge Rare Disease Network:
23rd September
9:00- 5:30pm – £25 +
Equal access to care for rare diseases
Huge strides have been made in developing ways to tackle rare diseases – which the European Union (EU) defines as those affecting fewer than 1 in 2,000 people.