The International Society of Systemic Auto-Inflammatory Diseases
Patients
Patient organisations meeting
Autoinflammatory Awareness Month-Coming Together 2023! Celebrating 8 yrs
Welcome to the 8th official year of International Autoinflammatory Awareness Month celebrations! We have had global events throughout the month, and this virtual program will feature expert doctors from around the world, patient organizations and wonderful moments to take in all the videos and photos of the lighting and events held this year. With a finale and breakout rooms for patients to gather to connect based on their disease, or other rooms to address various topics.
This program will have translation by interprefy in various languages, and you can submit questions ahead of time for the speakers to cover for the question and answer sessions, and in their talks .
This year, we are honored to have a number of experts:
1. Dr Beata Wolska-Kuśnierz from the Centrum Zedrowia MDM Poland will be our first speaker, who is a PFAPA expert and advocate.
"What we know & what we don't know about the PFAPA syndrome and what's going on in Poland in terms of autoinflammatory diseases"
Including initiatives in Poland and resources that have been developed for patient education, and information about treatments, followed by a Question and Answer Session.
2. Dr Daniella Schwartz and Dr Kader Cetin Gedik from the University of Pittsburgh Medical Center (UPMC) will be presenting next, and have both trained at the National Institutes of Health (NIH) and are now caring for patients at the University of Pittsburgh. They will share about the growing programs at UPMC for autoinflammation and immune dysregulation, followed by a Question and Answer Session.
Dr Schwartz, who also leads the Schwartz Lab will be speaking about TNFAP/HA 20 and is an adult rheumatologist and leading research on autoinflammation and immune dysregulation
Dr Cetin Gedik is a pediatric rheumatologist with an interest in autoinflammatory diseases that was a key author and part of the expert consensus team for the recently published ACR/EULAR "points to consider" recommdentations for a number of autoinflammatory diseases, including Type 1 Interferonopathies.
3. Dr Fatma Dedeoglu from Boston Children's that runs an Autoinflammatory Disease Clinic, and is also involved in the CARRA Autoinflammatory/PFAPA Working group, and the Interational Society of Systemic Auto-inflammatory Diseases (ISSAID) Educational Committee, and Scientific Adivisor to the Autoinflammatory Alliance will be sharing some new resources for patients, and other helpful education for the program that will benefit all ages of patients.
4. There will be discussions on new research collaborations, and other opportunities, initiatives from patient organizations and more shared-more details to be announced!
5. A fun showcase of photos, videos and highlights from various global events and lightings of landmarks, builings and monuments from around the world, and messages of hope and inspiration will be shared.
6.Breakout sessions for a number of autoinflammatory diseases and topics for all will be at the end of the program, and more!
Contact karen@autoinflammatory.org for questions.