Annual Giving 2023: Autoinflammatory Alliance

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!

Your support will fund more research and help more patients!

We 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, even to their elected officials.  

2024 Goals: Patient Registry, more patient programs, online resource  updates, and research funding.

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 from 2019-21 to develop recommendations for the diagnosis, care and treatment of various autoinflammatory diseases. Now published and supported by the ACR and EULAR– leading global rheumatology medical societies. 

1. Il-1 mediated diseases "points to consider" ACR/EULAR recommendations
2. Type 1 interferonopathies "ponts to consider" ACR/EULAR recommendations
3. HLH/MAS associated "points to consider" ACR/EULAR recommendations

International programs with translations, including International Autoinflammatory Awareness Month, and mailings resources to thousands of patients.

Multiple abstracts, presentations and publications with researchers.

• The Autoinflammatory Alliance co-sponsored, organized, and managed the 2nd NIH-WRNMMC Symposium for Autoinflammatory and Immunedysregulatory Diseases at the NIH. 
  • Over 300 attendees at the symposium & hundreds of medical professionals from 25 countries viewed the symposium livecast,  archived as Day 1 , and Day 2 increasing awareness and understanding worldwide with the first livecast autoinflammatory conference. Plus concurrent Task Force working groups.
• Development of the Trans-American Autoinflammatory Diseases Research Network (TARN) bringing experts from the North and South America 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 Program–the largest patient-centered live event for the autoinflammatory community, with activities for children, lectures by expert doctors and researchers. (with a Livecast that was viewed by over 1500 patients and families that could not come in person.)

We 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 have brought patients together for regional events,  picnics, and have established and moderate large private patient communities online for people to connect and not feel so alone with their disease. 

We 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 in 2015. We are working on a 2024 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. Our online and print resources, support and programs  have helped many to finally get a diagnosis, and the right treatment, even after years or decades undiagnosed, or misdiagnosed.

We on a small operating budget with 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!