Autoinflammatory Alliance: Bringing Hope and Changing Lives For Those Living With Autoinflammatory Disease
August 18, 2023
August is Autoinflammatory Disease Awareness Month. One of the more common rare diseases that falls into the autoinflammatory disease category is Familial Mediterranean Fever, a hereditary systemic condition. Others include hyperimmunoglobulin D (IgD) syndrome (HIDS), familial cold autoinflammatory syndrome, Muckle-Wells syndrome, and neonatal-onset multisystem inflammatory disorder (NOMID).
This month, Global Genes asked Karen Durrant, RN, Founder and President of Autoinflammatory Alliance to talk about autoinflammatory diseases.
In 2006, the Autoinflammatory Alliance (formerly The NOMID Alliance) became the first organization in the U.S. solely dedicated to helping patients of all ages with rare autoinflammatory diseases. At the time, autoinflammatory diseases were largely unknown and underdiagnosed. The classification “autoinflammatory” was made in 1999, and only a few of these diseases had the genetics determined when we started. However, knowledge of these diseases grew rapidly over 30 years, with over 60+ autoinflammatory classified today.
When we started, most people with an autoinflammatory disease did not have a diagnosis and therefore did not have access to effective or correct treatment; they endured years to decades untreated or misdiagnosed. Most autoinflammatory diseases are lifelong, and most affect patients from infancy with chronic systemic inflammation that can include recurring flares of fevers, rash, and joint swelling. For most of these diseases, effective treatment is available, but getting a correct diagnosis is key to getting the correct treatment. Earlier diagnosis and proper treatment can change and even save lives. Karen Durrant and others who were either autoinflammatory patients or caregivers (or both) saw that improved knowledge and awareness in both the medical and patient communities were needed. This led to our mission to promote awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases.
With that mission in mind, the Autoinflammatory Alliance has developed multiple leading resources for doctors and patients and led major medical conferences bringing together autoinflammatory researchers and patients worldwide.
August International Autoinflammatory Awareness Month
For the first time in 2015, autoinflammatory patients worldwide had a month dedicated to bringing awareness to all autoinflammatory diseases. Autoinflammatory patients worldwide helped decide on August as the month dedicated to bringing awareness to all autoinflammatory diseases–August being the hottest part of the Northern Hemisphere summer was a good time to represent and advocate to legislators and raise awareness for autoinflammatory diseases that involve high fevers and inflammation. Initiated by the Autoinflammatory Alliance, this collaborative movement has grown to involve multiple organizations, medical societies, dedicated patients, healthcare providers, and researchers around the world, all shining a light on autoinflammatory diseases. This global engagement has led to government proclamations, buildings and bridges lighting up in orange, patient gatherings, virtual and in-person programs, and major medical conferences in just eight short years.
Shine A Light
Patient Education and Empowerment
All of our board members and leaders have experienced the challenges of getting a diagnosis and treatment. We know how important it is to become informed with trusted resources that are freely accessible to all, the need for patients and caregivers to be supported by others, have expert healthcare, and feel empowered to take action for their own health needs, and reach beyond to advocate together for these diseases on a local, national and international level.
A primary goal of the Autoinflammatory Alliance is to provide sufficient information so that patients can become knowledgeable participants and empowered advocates in their disease management plan. We have created several resources and programs to help patients learn about their disease and feel empowered and confident in their knowledge to work with their doctors as an equal team member in their care.
Resources such as the SAIDSupport.org blog, Healthier Ever After injection tips book, and disease information cards are just a few of our resources available for free to patients. We also have a team of volunteers who mentor patients through our social media platforms, guiding patients and caregivers on finding and understanding information about their disease and what questions and information are most important to bring to the doctors to discuss.
As we have grown, the need to engage in research and collaboration with medical societies to address unmet needs has become a more considerable effort. It is where most of our fundraising is focused because patient-driven research and collaborative work between patients, caregivers, and medical experts is essential. This work has grown over the past ten years, and we have bigger plans for a major research network to launch in the future.
Medical Education and Resources
Recognizing the needs of doctors treating autoinflammatory patients, and making it easier to find information is also crucial to helping patients and their healthcare providers. With over 7,000 rare diseases, doctors also need easy access to resources to help diagnose and treat their patients. This led to the creation of the Systemic Autoinflammatory Diseases Database and wall chart with a team of medical experts, found at autoinflammatory-search.org, the genetic testing comparison chart, and disease info cards. These have become important tools doctors use to help guide diagnosis, and our goal is to make it easier for doctors to find and use these tools. For both patients and doctors, we also provide information on access to treatments that can be a barrier around the world.
Medical Conferences and Virtual Seminars
In 2016 the Autoinflammatory Alliance supported and helped to coordinate the 1st Symposium of Autoinflammation and Immmune-dysregulation held at Walter Reed National Military Medical Center and in collaboration with the National Institutes of Health. In 2019, we co-sponsored and were a major funder and coordinator of the internationally attended 2nd NIH-WRNMMC Symposium on Autoinflammatory & Immunedysregulatory Diseases. This symposium brought researchers and doctors together to address unmet needs for the care and treatment of autoinflammatory diseases. The week’s events included a medical symposium, disease-focused working groups, and a patient and family education day.
The working groups led the development of consensus “points to consider” recommendations for groups of rare autoinflammatory diseases that previously did not have such guidelines established. These guidelines are now in print and supported by the American College of Rheumatology (ACR) and the European Alliance of Associations for Rheumatology (EULAR). And the collaborative Translational Autoinflammatory Research Network (TARN) started being developed. TARN will be established in the coming months to address more unmet needs across borders.
With COVID changing the course of in-person activities over the last few years, we continued our annual educational efforts by making them virtual, ultimately leading to more patients and doctors being able to attend from almost anywhere in the world. Collaboration with the Rheum-COVID Global Rheumatology Alliance, CARRA, ISSAID and medical associations to address patient needs and research has been a focus, leading to publications showcasing the challenges of autoinflammatory patients, including now the impact of COVID-19.
We are led by patients and caregivers who all work hard to make this path easier for others. There is strength in working together, collaborating with other organizations, and helping mentor and advocate for change. Our awareness and fundraising goals all support this mission, along with more education and outreach for patients and medical professionals and getting all to work together more.
Autoinflammatory Alliance Website: http://autoinflammatory.org
International Autoinflammatory Awareness Month site: https://autoinflammatorymonth.org/
SAIDsupport blog: http://saidsupport.org
Autoinflammatory disease database/chart: http://www.autoinflammatory-search.org/diseases
Genetic testing comparative chart: https://saidsupport.org/diagnosis-genetics-periodic-fever-syndromes
Healthier Ever After Book and Plan to help children manage their injections-pdf version online, contact us for print copies. PDF versions in 14 languages now available or in print. http://saidsupport.org/debut-healthier-ever-injection-tips-book-autoinflammatory-diseases/
Educational resources, wallet card requests, 504 plan guides and more at this link: http://saidsupport.org/educational-resources-help-family-friends-teachers-understand-autoinflammatory-diseases/
A large part of our collaborations to address patient needs and lack of information for medical professionals led to management and financial support for the working groups for these ACR/EULAR endorsed “points to consider” for a number of autoinflammatory diseases, and others are being developed later.
Il-1 mediated diseases (CAPS, TRAPS, MKD/HIDS, DIRA) https://ard.bmj.com/content/81/7/907
Type 1 interferonopathies (CANDLE/PRAAS, SAVI,AGS) https://ard.bmj.com/content/81/5/601
HLH/MAS https://ard.bmj.com/content/early/2023/07/21/ard-2023-224123 with the help and support of the SJIA Foundation.
Karen Durrant, RN, is the founder and President of the Autoinflammatory Alliance. Her passion is to help increase awareness about autoinflammatory diseases and empower patients and medical professionals with information and support.
Special thanks to Jennifer Tousseau, Autoinflammatory Alliance Board Member and Patient Advocate, for her contributions to this post.
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