The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, care and treatment for all people with autoinflammatory diseases.
There is a helpful brochure on our website that discusses more about what we do, but here are a few highlights:
• The Autoinflammatory Alliance helps people of all ages with autoinflammatory diseases. We are based in the United States, but also assist patients from around the world.
• We provide free materials in various languages for patients and medical professionals to use to increase understanding and awareness about various autoinflammatory diseases.
• Our multi-lingual website provides information about autoinflammatory diseases for patients, doctors, and caregivers in various languages, with links to online patient groups, research, and helpful resources.
• Board members do a number of outreach and awareness efforts yearly to increase awareness about these diseases in the medical community and for the public.
• Patients and medical staff contact us frequently to find specialists in their region of the country, or the world, to help aid them in diagnosis and treatment. We also refer people to clinical trials and research programs for various autoinflammatory diseases, and help them to get into travel assistance programs, if needed.
• We advocate for patients on a local, national, and international level to promote more research, legislation, and better access to care and beneficial treatments for autoinflammatory and other rare diseases.
• Refer people to patient assistance programs for medications, so patients can have access to treaments.
• Our efforts to empower patients with understanding of their disease, available programs, treatments, and a way to connect with other patients include:
– Moderated public & private online forums
– Coordinating patient gatherings to facilitate in-person meetings with others with these rare diseases
– Collaborating with other rare disease and autoinflammatory disease organizations worldwide
2012 Rare Voices: Rare Champion of Hope-Patient Advocate Nominee
2012 Global Genes Project Tribute to Champions-Nominee
In 2008, we co-authored, and published the first medical guidebook on Cryopyrin-Associated Periodic Syndromes (CAPS) and the first version of the Comparison Chart of Autoinflammatory Diseases (at that time there were only 4 on the chart!). This was presented at the 2008 ISSAID Congress poster presentations on Autoinflammation in Rome, Italy, and was distributed worldwide that year. It was also made available on our website, which has been accessed by hundreds of doctors, and patients. This first chart, and CAPS guidebook helped a large number of patients to be diagnosed with these diseases, and many large family groups with CAPS in their family for generations were finally diagnosed after they shared these materials with their doctors. Our 2012 is edition is available in print, and as a pdf online in English and Spanish.
We improved our website in 2011-2012, and expanded the language options to include French and Spanish, in addition to English, and even more autoinflammatory diseases!
In 2013, we presented the first version of the Comparative Chart of Systemic Autoinflammatory Diseases (SAID) at the Autoinflammation 2013 Congress in Lausanne, Switzerland during a poster session and online after that presentation. It had an enormously positive response from leading experts worldwide on these diseases.
Later in 2013, we made an improved version of the diagnostic chart, with the latest updates from that congress for release at the American College of Rheumatology Meeting in San Diego, CA. We passed it out at our non-profit booth, which was a big hit at the conference! Many doctors came up to us, and told us that they had used the online version to study and pass their rheumatology boards. Others said that the chart was, “the best thing that they got at the ACR meeting.” We were thrilled that so many were excited about it. The number of doctors contacting us with newly diagnosed patients, or their patients contacting us for help, increased greatly within weeks of the ACR meeting, which was attended by over 14,000 people (mostly rheumatologists, and other doctors). The chart will be distributed in 2014 by mail to even more doctors, but we passed out thousands of copies directly into the hands of doctors at these meetings that were from every continent in the world, except Antarctica!
Plus we have been developing this blog and created a helpful injection tips guidebook and incentive chart program for children who need to use injectable medications that will be available in print, and as a pdf in early 2014. We are very excited about it, and will share it here on the blog as soon as it is finalized!
The demand for information about these diseases is great, and we are working on having a more user-friendly online interactive, multilingual version of the chart for release in late 2014 or early 2015.
A Few Thank Yous
We could not do any of this without the help of our dedicated volunteers on our board and in our patient community, plus all our donors and grant-givers.
Special thanks go to Swedish Orphan Biovitrum (Sobi) for an unrestricted grant in 2013 that helped us to develop this blog, printing of the chart for ACR, an educational grant for the creation and production of the injection tips book with The CementBloc, and support for our upcoming patient picnics in 2014.
Also, a deep thanks to Novartis Pharmaceuticals Canada for an unrestricted grant for the initial development of the chart in English and for a French version that is in the works.
Regeneron Pharmaceuticals has given us unrestricted grants in 2007 and 2011 to help cover the printing and production costs for our CAPS guidebooks in English and Spanish.
Novartis Pharmaceuticals gave us an unrestricted grant in late 2009 to help us with the development of the current website, and translation which has been very helpful.
The Autoinflammatory Alliance is a 501(c)(3) non-profit organization dedicated to helping those with autoinflammatory diseases.
We greatly appreciate everyone’s support, and dedication to the cause and look forward to working on more things in the future! Thank you.