Autoinflammatory Alliance

Today is #GivingTuesday! Please consider donating to the Autoinflammatory Alliance for #GivingTuesday2024 so we can help more patients, medical professionals, and fund more research for autoinflammatory diseases. Thanks! This is our direct link https://lnkd.in/giFTjwdt to donate to the #Autoinflammatory Alliance via our GiveButter portal that works with credit cards, Venmo, PayPal, Apple Pay, Google Pay. Thank you. Any amount helps! We also do matching funds w/ Benevity & other sites.

Today is #GivingTuesday! Please consider donating to the Autoinflammatory Alliance for #GivingTuesday2024 so we can help more patients, medical professionals, and fund more research for autoinflammatory diseases. Thanks! This is our direct link https://lnkd.in/giFTjwdt to donate to the #Autoinflammatory Alliance via our GiveButter portal that works with credit cards, Venmo, PayPal, Apple Pay, Google Pay. Thank you. Any amount helps! We also do matching funds w/ Benevity & other sites.

The revised SHARE recommendations for the diagnosis and treatment of Mevalonate Kinase deficiency are out. Thanks to Tamás Constantin for coordinating this important work for our patients

In October, our collaborative research was published, that featured data from the first year of the COVID-19 pandemic, and the impact on patients during that time. Note that the data on the cases of COVID-19 infection were largely prior to vaccination, or targeted treatments for this infection. We may do a follow up to this study, but this paper captures a lot of information on COVID-19 infection and post viral flaring and symptoms, plus the impact of access to care, and sheltering in place during the first months of the pandemic. "Results: We analyzed 484 surveys that conveyed data from 593 patients with SAID. Seventy-four percent of the surveys were answered in the United States, US territories, and Canada (n=360/484) and the rest from other countries. Sixty percent (n=330/547) of patients with SAID did not experience changes in the frequency of flares during the first year of the pandemic. Ten percent (n=52/545) of patients had presumed or confirmed COVID-19. Of those, 81% (n=42/52) had mild and moderate symptoms and 4 were hospita lized. Thirty-one percent (n=16/52) experienced flares during or after the infection and 40% (n=21/52) reported post-COVID manifestations. The individuals who had moderate symptoms or were hospitalized for COVID-19 were more likely to report post-COVID manifestations, OR 5.25 (95%CI 1.57- 17.6, p=0.0072). Post-COVID integumentary manifestations occurred after asymptomatic and mild COVID-19 whereas neurologic manifestations occurred after acute COVID-19 with moderate symptoms or requiring hospitalization. Conclusion: During the COVID-19 pandemic, over half of patients with SAID did not experience changes in the frequency of flares despite a decreased exposure to environmental triggers. Few individuals with SAID required hospitalization for COVID-19. The presence and type of post-COVID manifestations were associated with the severity of acute COVID-19 in patients with SAID." https://lnkd.in/g_a3ZmJk

Sign up for the February 21-22, 2025 hybrid (in person and online) 3rd Autoinflammatory Disease Symposium and Education Summit on Pediatric Rheumatology in Woolloongabba, Queensland Australia! The second day has a patient program. A special thanks to Zoe's Angels, Garvan Institute of Medical Research Walter and Eliza Hall Institue (WEHI), Hudson Institute and many others making this program possible. Register at this link: https://lnkd.in/gZxhJYBB

Attention Scientists and all Healthcare Professionals: Make sure to register for the International Society of Systemic Auto-Inflammatory Diseases (ISSAID) Congress being held in April 8-10 2025 in Paris, France! There will be a Young Investigator meeting and possibly a patient program ahead of the congress. https://lnkd.in/guVJwvmk Abstracts are due Dec. 18th.

Looking to engage healthcare professionals in your #RareDiseaseDay 2025 campaign? Don’t miss this opportunity to learn from global experts! Join Rare Disease Day for a discussion with an expert panel on strategies to engage healthcare professionals and improve awareness for better diagnosis, care, and support for those living with rare diseases. ???Rare Disease Day 2025 Webinar: Healthcare Professionals ????13 November 2024 ??2:00 CEST ???https://lnkd.in/ey9dgdpt #community #Healthcare #diagnosis #awareness #community #global

September is Newborn Screening Awareness Month! ?? #NBS NBS is important to people living with a rare disease and their families because for approximately 70% of rare diseases the onset occurs during childhood, but do not appear until months following birth. To raise awareness of the crucial importance of NBS to our community, we will be diving into the findings of the 2024 #RareBarometer survey on the opinion of people living with a rare disease on newborn screening! ?? Stay tuned and in the meantime, learn more about the actions we are taking to advocate for expanded, harmonised NBS programmes across Europe: https://lnkd.in/dNTVU5ct #RareDiseases #NewbornScreening #survey #NewbornScreeningAwarenessMonth

A reminder to do your Orange Out for Awareness August 30th-31st & wear your orange, share photos & raise awareness at the end of International #Autoinflammatory Awareness Month w/ ##autoinflammatoryawareness #august4autoinflammatory #hope4SAID #augustmesdelosautoinflamatorios !

Here is the zoom link from the Sat, August 24th, 2024 International Autoinflammatory Awareness Month virtual program. Thanks to the doctors that presented and to all that have done events, and helped raise awareness around the world. Prof Sophie Georgin Lavialle from H?pital Tenon, France: CeRéMAIA and FAI2R did an amazing job covering many adult autoinflammatory diseases. Prof Erkan Demirkaya spoke about the develping Translational Autoinflammatory Research Network (TARN) and how it will help patients, and about pediatric care and transition to adult care at Western Univerysity in Ontario, Canada. We also had Dr Fatma Dedeoglu discuss with the other doctors during a longer Q & A session before we had our unrecorded patient discussions at the end to answer more questions. Translation started a bit later, but click on the globe to get the translation. We have tried to recognize all that have had events and lightings at the end of the program. Thanks to everyone! Watch to the end to see all the events, illuminations and information about events this week. We appreciate all that registered, and came. Unfortunately, Alice Payne, comedian and Amanda Panko advocacy and policy expert got sick ,so we will have them back for another program. We hope they can feel better soon. https://lnkd.in/dMarhBAZ #autoinflammatoryawareness #august4autoinflamatory #augustmesdelosautoinflamatorios #hope4said #morethanafever #shine4autoinflammatory