The Autoinflammatory Alliance is the official organizer for International Autoinflammatory Awareness Month since 2015, and we collaborate with other organizations for this effort.
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. You are welcome to get involved anytime!
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.
Participating Organizations for International Autoinflammatory Awareness Month
International Autoinflammatory Awareness month 2021 has been organized by the Autoinflammatory Alliance with co-collaboration with KAISZ and STOP FMF and with the input from patient advocate globally. The official 2021 International Autoinflammatory Awareness Month Video was a collaborative effort led by Will and Chris Kinchlea, from Daniel’s Disease, along with the organizers for the 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 International Society of Systemic Auto-inflammatory Diseases (ISSAID) is the leading global medical society bringing together clinicians, researchers and scientists, other medical professionals and patient organizations.
“We provide support to share information and experiences to improve the“
quality of life of patients affected by systemic autoinflammatory diseases.
It is an honor to have ISSAID as a participant in International Autoinfammatory Awareness Month, and they have improved access to training for medical professionals, and understanding and collaboration to address needs for these rare and emerging diseases, especially now with the Periodic Congress sessions throughout 2021. Upcoming sessions start in again in September, and registration will allow you to watch past sessions.
Stop FMF (Spain) is a co-coordinator for the 2021 International Autoinflammatory Awareness Month, and is leading an amazing building illuminations program in Spain in August to raise awareness for autoinflammatory diseases. Follow them on Facebook and Twitter, They also shared this video.
The Canadian Autoinflammatory Network has been a leading help with the 2022 illuminations and events in Canada for International Autoinflammatory Awareness Month. Follow them on Facebook . We are happy to have them collaborating, and for their their efforts in Canada.
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!
La Sociedad Española de Reumatología Pediátrica (SERPE) is The Spanish Society of Pediatric Rheumatology, a scientific society that brings together healthcare professionals with an interest in Pediatric Rheumatology. They are supporting International Autoinflammatory Awareness Month in Spain, and they are helping to support the building illuminations in Valencia, Spain (an initiative with Stop FMF).
Centro de Investigación Príncipe Felipe (CIPF) is a leading research center in Spain, that is also helping to support the building illuminations in Valencia, Spain (an initiative with Stop FMF).
Muy Ilustre Colegio Oficial de Farmacéuticos de Valencia (MICOF) (The Official College of Pharmacists of Valencia) is the oldest pharmceutical society in the world surpassing medieval associations such as guilds or brotherhoods, founded in 1441. The College provide quality and ongoing training for pharmaceutical professionals. They are also helping to support the building illuminations in Valencia, Spain (an initiative with Stop FMF).
The Garvan Institute of Medical Research is supporting International Autoinflammatory Awareness Month in Australia, and raising awareness for these rare diseases, and researchers at their institute that are trying to find new pathways and treatments for these conditions. They featured Dr Rogers on their Facebook page for awareness and for his research for Mevalonate Kinase Deficiencies (MKD/HIDS.)
RareConnect has been helping to raise awareness for International Autoinflammatory Awareness Month for the past 4 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.
Federación Española de Enfermedades Raras (FEDER) is the Spanish Federation for Rare Diseases, a leading Rare Disease organization in Spain that is also helping to support the building illuminations in Valencia, Spain (an initiative with Stop FMF) for International Autoinflammatory Awareness Month.
Sociedad Española Multidisciplinar de Enfermedades Autoimunes Sistémicas (SEMAIS) is the Spanish Multidisciplinary Society of Systemic Autoimmune Diseases that is also helping to support the building illuminations in Valencia, Spain (an initiative with Stop FMF).
La Ciutat de les Arts i les Ciències in Valencia, Spain was the generous host of some of the impressive building illuminations in Valencia, Spain (an initiative with Stop FMF) in honor of International Autoinflammatory Awareness Month.
El Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias de Burgos (Creer) (State Reference Center for Attention to People with Rare Diseases and their Families of Burgos (Creer)) is an essential rare disease organization that is also helping to support the building illuminations in Valencia, Spain (an initiative with Stop FMF).
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 American Behçets Disease Association (ABDA) supports, educates and empowers the Behcet’s Disease patient community, while continuously advocating for better research, diagnostics, treatment and a cure. They have been involved in awareness efforts and advocacy, and have also collaborated for Autoinflammatory Awareness Days Patient Picnics around the US with the Autoinflammatory Alliance in 2014, and are a great resource for patients with Behçets and other rare disease organizations..
The Cure Blau Syndrome Foundation (International, based in Canada) is raising awareness and supporting research for Blau Syndrome (aka Early-Onset Sarcoidosis).
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 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 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 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.
The Pericarditis Alliance is a nonprofit organization dedicated to the diagnosis and treatment of pericardial disease through research, education, and support for patients and healthcare providers.
The Disability Channel is based in Canada, but broadcasts around Canada and the US. They have dedicated their programming and nonprofit efforts to help people with disabilities, rare diseases and also helping those that have become disabled due to serving in the armed forces in North America. Their programming is available on Roku, YouTube, and in TV various parts of North America, and is expanding, and they would like to raise more awareness for autoinflammatory diseases and other rare diseases.
“TDC has a mandate to employ, support and promote persons with disabilities via our content, platform and marketing components, making the network stand out within the television and Healthcare industries.”
Community Supporters of International Autoinflammatory Awareness Month
Daniel’s Disease (Canada) (Chris and Will Kinchlea) made the official International Autoinflammatory Awareness Month video in collaboration with a number of patient advocates and organization representatives. Chris is a patient advocate and writes a blog, along with the Daniel’s Disease facebook group “strive to share information about life with a chronic autoinflammatory disease and what it’s like living with a rare rheumatic condition.”
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.
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 in 2020.
Patient Support Groups
Autoinflammatory UK is a UK-based patient support group for autoinflammatory diseases, that have been a supporter of International Autoinflammatory Awareness Month for many years.
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.
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.
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.
- 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
A special thanks to our 2021 Sponsors for our Patient Programs on August 7th and 28th, language translation for the programs, and patient autoinflammatory awareness kits.
Diamond level: Sobi
Kiniksa Pharmaceuticals, and Sanguine Biosciences Inc.
For 2022, we have not sought sponsorship for International Autoinflammatory Awareness Month, although we have greatly appreciated the interest.
This year during awareness month, we have chosen to encourage industry support for upcoming ISSAID Winter School 2022 training programs for fellows; and the ISSAID 2023 Congress in Toronto, Canada in May 2023 that will have a concurrent Patient Organizations Program that are essential for global education and research sharing for autoinflammatory diseases. Please contact the International Society for Systemic Auto-inflammatory Diseases (ISSAID) or [email protected] if you are interested in learning more about how to support these important programs.
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.