Patient organisations meeting

 

Register for the free, virtual Saturday, August 27th program with translation–featuring expert autoinflammatory doctors, a special children’s program with Project Sunshine, fun videos and breakout rooms for various diseases! (Scroll down the page to read the full program, or go to the registration link here to learn all the details): https://www.eventbrite.com/e/autoinflammatory-awareness-month-coming-together-2022-registration-401997594627

MAIN PROGRAM:

8:00 Welcome

Part 1: Looking at the whole spectrum of Autoinflammation, and overlapping symptoms and features:

8:10-8:30 am Dr Hal Hoffman will do a talk with some inspiration based on this recent paper by Dr Broderick and Dr Hoffman

(Start of the concurrent program for Children with Project Sunshine on a separate secure zoom platform)

8:30-8:40 am Dr Dedeoglu: Behçets-like disease autoinflammatory diseases, including HA20, RELA, and unclassified autoinflammatory cases.

8:40 am-8:55 am Q & A Panel With all the doctors in the program.

Part 2: Untangling Genetic Findings:

9:00-9:30 am Dr Broderick: A step-by-step presentation on genetic testing and interpretation

9:30-9:45 am Q & A Panel Genetics discussion with all the doctors in the program.

9:45-10:00 am Video Showcase: Featuring Autoinflammatory landmark lighting videos from around the world, Shine a light patient videos, and coping tips compilation videos. See the casting call area below to get involved and share your photos, and videos!

Part 3: The needs of the Adult patient, and transitioning to adult care, featuring:

10:00-10:15 am Dr Hausmann (pre-recorded) Transitioning to adult care

Dr Demirkaya: Transitioning and other topics to be announced

Dr Olcay Jones: Transitioning App-"Pediatric to Adult Care"

Part 4: Addressing psychosocial needs:

10:15-10:23 am Addressing Psychosocial needs talk by a Spanish social worker from Stop FMF

10:23-10:30 am Q& A for Transitioning, and psychosocial needs questions

Part 5: Collaboration, networking to improve patient care, and shared research efforts:

10:30-10:45 Dr Demirkaya-ACR/EULAR Task Force points to consider recommendations for Il-1, IFN, and upcoming MAS associated diseases.

10:40-10:45 Karen Durrant RN, BSN: Translational Autoinflammatory Research Network (TARN) initiative: history, shared goals for networking research, education. TASK FORCE collaboration w/ pt orgs, advocates, Drs and medical societies

10:45-10:50 Dr Dedeoglu: CARRA SAID Network Development & Advocacy research highlights

10:50-10:55 Dr Demirkaya, Dr Dedeoglu, Dr Broderick and others will share about the International Society of Systemic Auto-inflammatory Diseases (ISSAID) highlights and upcoming programs

Announcing our Autoinflammatory heroes and Pathfinders!

Closing remarks, thanks to our collaborators

11:00 am Breakout rooms for various disease groups open up! (all welcome) No official translation or recordings in breakout rooms

 

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