Clear explanations and practical resources for patients, families and clinicians.
34 results
VEXAS syndrome: a guide for patients and families
Understand VEXAS, acquired UBA1 changes, the care team and questions to bring to a specialist appointment.
Patient toolkit: prepare, track and plan
Printable worksheets for symptoms, appointments, daily life, medicines, monitoring and the move to adult care.
CNO and CRMO: when bone inflammation is not a bacterial infection
A family guide to chronic nonbacterial osteomyelitis and recurrent bone inflammation.
SAPHO syndrome: connecting bone, joint, and skin symptoms
Understand the connection between bone, joint and skin inflammation in SAPHO.
Still’s disease in children and adults: different names, shared goals
A patient and family guide to Still’s disease across childhood and adulthood.
Monitoring Autoinflammatory Disease
Understand follow-up, tracking inflammation and discussing monitoring with your care team.
Preparing for Your Autoinflammatory Disease Visit
Organize your symptoms, medical history and questions before an appointment.
Living With Autoinflammatory Disease
Practical resources for school, work, daily routines and transition to adult care.
Autoinflammatory Disease in Adults
An introduction to autoinflammatory disease in adults, including Still’s disease and VEXAS.
Mevalonate Kinase Deficiency (MKD / HIDS)
Understand mevalonate kinase deficiency, also called hyper-IgD syndrome or HIDS.
Cryopyrin-Associated Periodic Syndromes (CAPS)
An overview of cryopyrin-associated periodic syndromes, including FCAS, Muckle–Wells and NOMID/CINCA.
Familial Mediterranean Fever (FMF)
Start with the symptoms, diagnosis, treatment and monitoring of familial Mediterranean fever.