Participating Organizations

International Autoinflammatory Alliance Month is an global initiative, and we welcome organizations to submit their logo and info on our Contact Us page to be listed on this page.

Participating organizations are free to honor the month as they choose, and we would like to feature all that are interested on this page, with their logo hyperlinked to their sites to showcase their activities for Autoinflammatory Awareness Month, and all throughout the year.

There are no financial, partnerships or other obligations to be listed as a participating organization for International Autoinflammatory Awareness Month.

This page is to help raise awareness for all the organizations dedicated to autoinflammatory and immunedysregulatory diseases, and also any medical societies, and other organizations dedicated to rare diseases as well.

A few autoinflammatory diseases have an immunodeficiency component, along with autoinflammatory features. In addition, patients with certain autoinflammatory diseases can have other complications, including macrophage activation syndrome, amyloidosis, vasculitis, hearing loss, vision impairments, neurologic challenges and more. Some patients may have arthritis and other conditions due to their autoinflammatory disease, so the impact of having an autoinflammatory disease can be complex, and we would like to welcome, and feature any other organizations that are dedicated to the range of complications that can affect our patients.

The Autoinflammatory Alliance is the official organizer for International Autoinflammatory Awareness Month since 2015, and we collaborate with other organizations for this effort.

Participating Organizations for International Autoinflammatory Awareness Month

The Autoinflammatory Alliance (international, based in the USA) has been organizing Autoinflammatory Awareness Month since 2015. Follow us on Facebook, Twitter and Instagram for all our awareness initiatives, and also the other participating organizations and community supporters on this page. Thank you!

The Ukranian Association of Pediatric Immunology (Всеукраїнська асоціація дитячої імунології) is helping to raise awareness on Facebook in Ukrainian and English. They are also preparing helpful information about autoinflammatory diseases. Here is their FMF paper in Ukrainian. We will add more as they are published!

RareConnect has been helping to raise awareness for International Autoinflammatory Awareness Month for the past 3 years, and they have some wonderful, secure international patient communities for various rare diseases, including many for autoinflammatory diseases, including FMF, CAPS, MKD/HIDS, CRMO, TRAPS, Schnitzler’s Syndrome, and Behçet’s. Volunteer moderators for these patient communities come from various patient organizations, including many supporters of International Autoinflammatory Awareness Month.

The RareConnect team is made up of employees from the non-profit organizations: EURORDIS– Rare Diseases Europe and Care4Rare Canada.

The European Network for Children with Arthritis and Auto-inflammatory diseases (ENCA) (International) is raising awareness, so follow them on Facebook for updates. They also are the patient organization that works with the Pediatric Rheumatology European Society (PReS), and PRINTO.

The Systemic JIA Foundation (based in the USA) is dedicated to accelerating research & treatment for Systemic JIA (Systemic Juvenile Idiopathic Arthritis), also known as Still’s Disease and associated complications such as Macrophage Activation Syndrome (MAS).

Kaisz and Vaisz (Netherlands) have some plans for autoinflammatory month. Follow them on Facebook for updates.

The Cure Blau Syndrome Foundation (International, based in Canada) is raising awareness and supporting research for Blau Syndrome (aka Early-Onset Sarcoidosis). Register for their August 25th Virtual Blau Syndrome Research Panel (free) to learn more about Blau Syndrome.

Stop FMF (Spain) is raising awareness for autoinflammatory diseases this month on Facebook and Twitter, and shared this video.

Cassie +Friends (Canada) helps patients with rheumatic diseases.
They have some special patient stories and online activites for Autoinflammatory Awareness Month, so follow them on Facebook and Instagram!

The Purple Playas Foundation (USA) was founded by a rare disease patient and their family, and provides support and resources in the area of pediatric complex chronic care needs. Their incredible coping kits for children are available for purchase, or gifted to children in need.

The International Foundation for Autoimmune and Autoinflammatory Arthritis “helps those, like us, who are affected by autoimmune and autoinflammatory diseases that include inflammatory arthritis as a major early component (AiArthritis), use their voices – as equals alongside other stakeholders – to solve problems that impact education, advocacy, and research. We do this through patient-peer led activities that empower all people to share their personal experiences and perspectives, and in turn, improve their own healthcare journeys while helping us develop resources that matter to the masses.” Visit our events page and their site to learn more about Still’s Day (9/7/20).

The Familial Mediterranean Fever Foundation (International, based in the USA) helps patients globally with FMF. They have a nice collection of news media articles that have been published about FMF patients that are raising awareness for this autoinflammatory disease.

Hope Service Dogs (USA) is a nonprofit that breeds and trains dogs to assist people with disabilities, and their dogs are trained and placed with patients all over the US. They specialize in training dogs for various disabilities, including dysautonomia, medical and mobility issues and hypermobility conditions, which can affect autoinflammatory patients as well. They have helped to raise awareness for autoinflammatory diseases with International Autoinflammatory Awareness Month on social media.

Community Supporters of International Autoinflammatory Awareness Month

The Flying Lifeguards (USA) has a fun Facebook page with inspiring images, videos and special programs to bring cheer and hope to children and their families dealing with autoinflammatory diseases.

Still’s disease, the 411 (USA-based) is a patient founded, evidence-based online publication and resource site here to amplify the patient voice and improve decision making between the patient and provider.

Patient Support Groups

The patient group, Sweet’s Syndrome UK, has a Facebook page and HealthUnlocked community where you can find lots of information about the autoinflammatory condition and neutrophilic dermatosis, Sweet’s syndrome.

Pericarditis can be recurrent or chronic, due to autoinflammation, and it can also occur in some patients with certain autoinflammatory diseases. The Global Pericarditis Support Group and the UK Pericarditis Support Group help patients with pericarditis worldwide.