Autoinflammatory Month Impact-We Need Your Help!

The Autoinflammatory Alliance is dedicating Autoinflammatory Awareness Month in August 2019 to supporting research, and empowering and educating doctors and patients as the co-sponsor, and lead funder and coordinator of the 2nd NIH-WRNMMC Symposium on Autoinflammation and Immunedysregulation on August 22-23, where there will be an "Autoinflammatory Boot Camp" to train doctors on how to care and treat these diseases led by expert doctors and scientists. Also, this group of 90+ autoinflammatory experts will be meeting in working groups to draft guidelines for diagnosis and treatment, and management of serious needs for 4 major categories of autoinflammatory diseases, (more detail below) . Then we will have an engaging Patient and Family Day on Saturday, August 24th, where specialists will speak to patients and caregivers, along with fun activities for children.  

Your support is essential! Every donation helps-big or small! This initiative needs to be supported with funding that is from the patient community and general public, and not from medical industries, such as pharmaceutical companies, to accomplish the goals, and comply with NIH and federal guidelines. 

The main goals of the symposium are:

• Building a Trans-American Network for autoinflammation and immune dysregulation that can interface with existing groups.
• Morning scientific sessions presenting new research, and a special Grand Rounds on Friday morning with cases presented that feature autoinflammation & immunedysregulation.
• Education for medical professionals interested in learning more about autoinflammatory diseases, and how to diagnose, care and treat patients. There will be an afternoon session that will have an "autoinflammatory boot camp" set of sessions for training doctors.
  
  The working group of experts drafting the guidelines for the care and treatment of these autoinflammatory diseases will also be focusing some attention on un-met needs, and complex case management for:
• IL-1 mediated diseases (TRAPS, CAPS (NLRP3-AID), and MKD/HIDS) (working group 1)
• Type I IFN-mediated autoinflammatory diseases (SAVI, CANDLE, AGS and others (working group 2)
• Macrophage activation syndrome (MAS)/hemophagocytic lymphohistiocytosis (HLH), SJIA/Stills, NLRC4 and other MAS affected diseases (working group 3)
• Selected other autoinflammatory diseases (DADA2, CRMO, Blau & granulomatous diseases) (working group 4).
  
  

Topics for the scientific sessions include:
Inflammasome-mediated diseases and regulating kinases, neutrophils, NETS and autoinflammation, epigenetics and autoinflammation, microbiome and immune dysregulation, non-coding RNAs and regulation of intracellular sensors, transcriptomics and clinical implementation, plus, gene editing and bone marrow transplantation in rare Iimmunedysregulatory diseases and autoinflammatory diseases, and more.

The Autoinflammatory "Boot Camp" training session track includes talks on:

• Boot camp Genetics (how to order and how to interpret genetic data)
• Boot Camp: Biomarkers in Autoinflammation
• NIAID Grand Rounds (Friday morning) with a focus on autoinflammation & immune dysregulation cases
• Autoinflammatory diseases for the Adult including Schnitzler’s and adult-onset CAPS
• Treatment of patients without mutations (PFAPA & other periodic fever syndromes and difficult MKD/HIDS)
• Autoinflammatory Interferonopathies (Diagnosis and Treatment-CANDLE, SAVI, AGS and others)
• The Spectrum of Still’s disease
• Diagnosis and Treatment of the undifferentiated (unclassified autoinflammatory patient)
• Problems in treating patients with IL-1 mediated diseases
• Transition to the adult service, and challenges
• Treatment approach to granulomatous diseases
• Diagnosis and treatment of DADA2 and CRMO
• HA20 (TNFAIP3) and Behçet’s-like diseases
• HLH vs. MAS, and treatment considerations
• More topics to be announced later!

The Autoinflammatory Alliance is a co-sponsor and funder for this symposium with the NIH NHGRI and NIAID, WRNMMC and also the SJIA Foundation is collaborating and financially supporting this symposium.

The Autoinflammatory Alliance can accept donations from the general public to support our efforts for this symposium, to cover our share of the event costs, but the Autoinflammatory Alliance alone is asking for your support and donations-NOT the HHS, NIH, NHGRI, NIAID, NIAMS or WRNMMC.

The HHS, NIH, NRGRI, NIAID or WRNMMC or any other institute does NOT endorse any fundraising activities in connection with the event. Any gift or donation will go solely toward defraying the expenses of the Autoinflammatory Alliance, not HHS, NIH, NHGRI, NIAID, WRNMMC or any other institute.

All days will be online as a webex for the symposium, recorded for later viewing, and the patient program will be livecast on social media for anyone interested.

All funds donated will directly support these programs that will make a big difference for patients, and help doctors to better care for their patients. Please donate today!  Questions? Email karen@autoinflammatory.org. Thank you!