Autoinflammatory Alliance Inc

Please help us with a donation today, of any amount to help more patients, support research, awareness and outreach for autoinflammatory diseases. Or show your support by setting up your own fundraiser for the Autoinflammatory Alliance. Thank you!

We work hard to help increase awareness about autoinflammatory diseases, and educate patients and medical professionals so they can better care for these rare diseases. Autoinflammatory diseases are lifelong conditions, that often start in infancy or early childhood.

Our goals for working with patients are to help them to connect with other patients, become informed about their disease and needs, and empower them to be able to advocate for the needs for care, and to their elected officials on issues.  

Your support is vital and will help us to increase patient-driven research network and registry to improve care for patients globally.

Donations have supported:

Task Force expert consensus working group meetings (virtually) from 2020-21 have developed recommendations for the diagnosis, care and treatment that will be published in early 2022, that also have the support of ACR and EULAR.

Two international programs with translations for International Autoinflammatory Awareness Month, and mailings of awareness kits to hundreds of patients.

Multiple abstracts, presentations and publications, including our COVID-19 ACR abstract.

• The Autoinflammatory Alliance co-sponsored, organized, and managed the 2nd NIH-WRNMMC Symposium for Autoinflammatory and Immunedysregulatory Diseases at the NIH. 
  • In addition to over 300 attendees at the symposium, hundreds of medical professionals from 25 countries viewed the symposium livecast (now archived as Day 1 , and Day 2 increasing awareness and understanding of these diseases worldwide. This was the first livecast autoinflammatory conference.
  • Concurrent Task Force working groups with expert doctors to draft guidelines for diagnosis, care, and treatment for four main categories of autoinflammatory diseases.
• Development of the Trans-American Autoinflammatory Diseases Research Network (TARN) bringing experts from North and South America together to collaborate on unmet needs for patients, consultations and referrals for patients, and improve access to medications and genetic testing. 
• The Autoinflammatory Awareness Month Patient Day Program–the largest patient centered event for the autoinflammatory community, featured activities for children and lectures for adults by expert doctors and researchers. (with a Livecast that was watched by over 1500 patients and families that could not come in person). 

We have had a number of collaborations with researchers, and also helped to fund, promote and participate in the 1st Symposium on Autoinflammation and Immune-dysregulation in 2016 at Walter Reed National Military Medical Center (WRNMMC). Highlights and video here.

In addition, we bring patients together for regional patient picnics, and have established and moderate large, active and private patient communities online so people can connect and not feel so alone with their disease, and provide educational materials in English, and other languages to patients and medical professionals worldwide to improve understanding and awareness for autoinflammatory diseases.

In 2013-14, we released our comparative chart for autoinflammatory diseases, and have distributed the chart to thousands of doctors worldwide. In a year, it became the leading resource and teaching tool for autoinflammatory diseases in the world.

Thanks to donations and grants, we were able to expand the chart into the leading, comprehensive  comparative chart search database at autoinflammatory-search.org that was released in 2015. We are working on a 2022 update, and expansion into other languages. 

Early and proper diagnosis leads to starting beneficial treatments that can stop, or prevent some of the serious and damaging effects of autoinflammatory diseases. This can lead to improved health and quality of life.

Getting doctors to consider autoinflammatory diseases when a patient presents with certain symptoms, such as a rash, recurrent fevers, vomiting, red eyes, joint pains, or tie in other serious things like hearing loss or inflammation in the eyes is essential. Many patients that went years without a diagnosis, and many have finally been diagnosed, and gotten help after they have found and shared our materials with their doctor, or the medical professionals have accessed these materials from our website, or in print.  

Our organization runs on a small budget with a large amount of volunteer and in-kind help to try to maximize the impact of all our donated funds to make a difference for autoinflammatory diseases.

We got our start in 2006 with the same mission and goals, but under the name "The NOMID Alliance."  We changed our name in 2014 to the Autoinflammatory Alliance to better reflect our purpose and founding goals, as the world of autoinflammatory diseases is expanding rapidly.

Thank you!