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 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).
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).
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
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
- Autoinflammatory Diseases-Rare But Not Alone!
- Cryopyrin-Associated Periodic Syndromes (CAPS): NOMID/CINCA, MWS, FCAS
- HIDS and MA Education and Support – Mevalonate Kinase Deficiency/Hyper-IgD