Easy to Understand Educational YouTube videos Covering Various Autoinflammatory Diseases

Periodic Fever Syndromes – This is a simple explanation of these diseases. This is a good video to help family, friends, teachers, and others understand CAPS, FMF, HIDS, PAPA, and Blau.

A Lifelong Challenge: Periodic Fever Syndromes – Dr. Helen Lachmann of the UK National Amyloidosis Centre in London explains these diseases with recurring fevers. This is another good simple explanation to share with others who want to learn more.

The Mysterious Syndrome Called CAPS – Comprehensive yet easy to understand video that explains the CAPS diseases.

Easy to Understand Info From The Flying Lifeguards

The Vasculitis Foundation Presents: Dr. Yusuf Yazici and Behcet’s Disease – Basic information about Behcet’s Disease

The DIRA Discovery – Easy explanation of DIRA and how the National Institutes of Health in Bethesda, MD (NIH) discovered the gene involved.

Brave 4-year-old Girl Gives Herself Daily Anakinra Injections – This is Brinley who has clinical HIDS/TRAPS giving herself her daily shot. This is an excellent video to show young children who need shots to treat their disease. She is an inspiration to kids and adults. Thank you Brinley for sharing! Learn more about Brinley and her family at Blessings for Brinley.

 In Depth Educational Videos

Fevers, Genes, and Histories: Adventures in the Genomics of Inflammation – A lecture given by Dr. Kastner, one of the lead autoinflamamtory researchers at the NIH, on the initial discoveries and researching into these diseases. It includes detailed explanations and treatments of several the diseases, including FMF, TRAPS, CAPS, DIRA, and a few others. Insightful case studies are discussed.

CC Grand Rounds: (1) Monogenic Autoinflammatory Diseases in Children: Disorders of Amplified Danger Sensing and Proinflammatory Cytokine Dysregulation (2) The Role of HLA in a Genetically Complex Autoinflammatory Disease: Intrigue on the Silk Route – Dr. Goldbach-Mansky and Dr. Michael Ombrello of the NIH discuss autoinflammatory disease pathways, NOMID, CANDLE, This lecture goes into great depth on the CANDLE studies, it’s symptoms, pathway and current treatment being studied. Dr. Ombrello discusses Behcet’s disease in great depth including symptoms with photos, genetics, pathway, and why Behcet’s is considered an autoinflammatory disease.


Patient Stories and Videos

Autoinflammatory Alliance Board Member Julie Cunningham shares her story of her daughter’s road to a diagnosis of CAPS. Click here to see the video.

Ariella’s Story – Living with familial Mediterranean fever

Rare Disease Day …One Perspective – From a family with a child with CAPS

Jacob Whelan – The story of the first child diagnosed with DIRA.

Prevou Story – PAPA Syndrome – the discovery of the PAPA gene