August 22, 2020 from 1-3 pm EST: The Boston Children’s Hospital Autoinflammatory Disease Family Workshop will be hosting an online conference for patients and families with autoinflammatory diseases, in honor of Autoinflammatory Awareness Month. Click here to register . The program will include pre-recorded and live medical, school and wellness talks. We hope to have an informative conversation and opportunities for Q&A.
1PM-2PM: Medical Presentations and Scientific Talks
“What Are Autoinflammatory Conditions” – Jonathan Hausmann, MD
“Update on Research and Approaches to Discovery and Treatment” – Lauren Henderson, MD, MMSc
“Inflammation and the Gut/Anti-Inflammatory Diets” – Sophie Burge, MS, RDN, LD
“Treatments, Challenges, Medications and Side Effects” – Fatma Dedeoglu, MD
Question and Answer Session
2:15PM-2:45PM: School and Wellness Talks
“Partnering with Schools: Is the School Nurse at the Table?” – Shanyn Toulouse, MEd, BSN, RN, NCSN, Northeast Regional School Nurse Consultant
“Stress Management and Coping during COVID-19” – Judith Siegel, LICSW and Jodie Shea
2:45-3PM: Program Closing
Please register for the event here: https://forms.gle/B2mUQjgUbU6rwCJM9. Zoom links will be sent to all pre-registered attendees.
Learn more, and watch excerpts from the previous 2018 Autoinflammatory Diseases Workshop on the autoinflammatorydiseases.org blog page.
September 7, 2020 : Still’s Disease Awareness Day 2020 From the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis):
“Still’s Disease Awareness Day was established in 2015* to celebrate Still’s patients globally, by all patient organizations and health service providers. The goal is to increase awareness and education about Still’s so we can expedite diagnosis, improve disease management, and help patients explain their disease to others. This is not an organization-specific event. We encourage all groups to participate, including raising funds for their organization. #StillsDayLearn more at www.aiarthritis.org/stillsday
*This day was originally established by the International Still’s Disease Foundation, which dissolved in 2017. Upon their closure, they requested AiArthritis maintain any remaining resources, including hosting this day
This year for Still’s Disease Awareness Day, AiArthritis will be launching Patient-Reported Still’s Disease educational materials and a global media awareness #MyStills campaign. While there are signature symptoms associated with this disease, it strongly affects each person slightly different. For too long, those living with Still’s–and their families–have experienced delays in detection and diagnosis partly because early symptoms and clinical disease features are uniquely blended to each persons’ journey. Understanding how Stills affects the general population – and the individual – is key to expediting awareness, diagnosis, research and potential remission. The campaign will include a video, featuring 5 persons affected by Still’s Disease differently, as well as a website pages and a worldwide social medial campaign, which will encourage as many people as possible to share their unique #MyStills experience. The goal is to continue the awareness posts throughout the year and into 2021.“
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