Autoinflammatory Alliance

October is CRMO Awareness Month! CRMO is an #autoinflammatory disease that is very painful, chronic and challenging for patients.

We are very happy to announce that 4 collaborative research abstracts with CARRA, the SJIA Foundation, KAISZ/ VAISZ, ENCA and our org, the Autoinflammatory Alliance are being featured at the 2020 Pediatric Rheumatology European Society (PReS) meeting this week! Saskya Angevare, one of our board members and our EU advocate who is also on the board with ENCA and KAISZ/VAISZ has been presenting some of the data from our collaborative 2017 #autoinflammatory patient survey, and ...Rashmi Sinha from the SJIA Foundation is presenting the data from our 2017 collaborative SJIA/Still's survey. Full Abstracts link: https://www.pres.eu/fil/PReS-2020-Proceedings-abstracts.pdf (sSearch #autoinflammatory to find the abstacts.) And Karen Durrant RN is presenting tomorrow morning for the Ukrainian Association of Pediatric Immunology (virtual meeting,-register here:https://o-zone.org.ua/24_AIdisease/

It is a special honor to be invited to speak at this program tomorrow that the Всеукранська асоцаця дитячо мунолог (Ukrainian Association of Pediatric Immunology) is hosting, with the support of Sobi. This program will be in Ukranian at 1830 their time, 8:30 am Pacific time, and my talk will be translated! Registration link: https://o-zone.org.ua/24_AIdisease/ Thank you for this opportunity!

Last chance to order on this great Epicure fundraiser that is benefitting the Autoinflammatory Alliance, and the Children's Inn at the NIH! The fundraiser stayed open a bit longer,because Epicure launched their new fall and winter products last week, so check it out! Get your orders in by tomorrow, September 21st at 12 noon Central Time. Thanks Julia Dotson for this wonderful fundraiser that was started during our August International Autoinflammatory Awareness Month! https://juliadotson.epicure.com//att/pWdPx3n6xo9uZ0T19TsE

Please take note of the latest recommendations from the American College of Rheumatology for the care of pediatric patients regarding COVID-19 on their site, and you can listen to the recording from last month's town hall meeting below. Here is the link to the current ACR pediatric rheumatology guidelines that you can print out: https://www.rheumatology.org//COVID-19-Clinical-Guidance-S Full paper here: https://onlinelibrary.wiley.com/doi/10.1002/art.41454 All ACR COVID gu...idance is located on their site here: https://www.rheumatology.org//Clinical-S/COVID-19-Guidance Please discuss these guidelines with your doctors for the best plan of care for you, or your loved one. Remember to share rheum-covid.org with your doctors if you get COVID, and do the patient experience survey if you are a patient with a rheumatic disease, and get COVID, or are a presumed case of COVID on the rheum-covid.org site too. #rheumcovid #autoinflammatoryawareness #autoinflammatory

Si tienes hijos con autoinflamatorios este programa es para ellos. No lo dudes apuntalo!!

Felix has been invited to speak as a panelist at the Global Genes Patient Advocacy (un)Summit. Last year I flew to San Diego to attend this event in person and ...it was incredibly inspiring. I know how hard this panel will be, but Felix is determined to do it and we are proud of him for his advocacy efforts. We are thankful to the organizers for helping us raise awareness about Blau. Rare diseases need advocates of all ages. 400 million people are currently estimated to be suffering with a rare disease. At least half of them are children. And 50% of these children will not live to see their 5th birthday - that is 100 million deaths. Even more sadly - many of these deaths could be prevented - with more research, more funding, more awareness, and more advocacy. https://globalgenes.org/events/rare-disease-watch-party-2/ Felix Townsin is a grade 5 student at École John Stubbs Memorial School. He loves math, science, engineering, art, reading, music and video games. Felix became an advocate for rare diseases when his sister, Lexi, was diagnosed with Blau syndrome. When Felix was 5, he became a published author with his book Don’t Floss Your Toes Advice from a 5-year-old. He wrote the book as a fundraiser for the Cure Blau Syndrome Foundation and has raised over $2,000 towards research for a cure. Me, my sister and Blau is Felix’s first film, and Felix hopes it will help raise awareness so that no other child has to suffer the devastating impacts of a rare disease.

While we can’t physically be on Capitol Hill, we are still advocating! Tomorrow, more than 120 rheumatologists, rheumatology professionals, and patient advocate...s will meet with lawmakers via video to discuss the healthcare challenges they are facing in the midst of COVID-19. You can get involved from home by emailing your lawmakers: https://acr.tw/2xEKh1P See more

To all that have suffered on 9/11 and onwards, you are always in our hearts. The lights will be back on tonight. We want to honor of all that have died on this day, and to all that have died later due to this tragedy, including 227 brave firefighters and first responders that have suffered from the exposure to all the dust and debris at the World Trade Center. I am sure this day will be very hard for all on the East Coast, that have also been hit so hard this year by COVID-19 too. We will never forget. <3

This family did not have many other features of SAVI, but the pulmonary issues were their main issue. Although rare, it may be a good idea to consider expanded testing and genetics with unexplained interstitial lung involvement and signs of inflammation, especially in children, and families. https://www.frontiersin.org/articles//fped.2020.00543/full #Autoinflammatory #SAVI

This is a medical paper about Turkish pediatric autoinflammatory patients that have also had COVID-19. This is very helpful to have these reports. Most patients have FMF, and we're on colchicine, but there are many other #autoinflammatory diseases also in this group of patients, and some are on biologic medications. CAPS, TRAPS, Blau, DADA2, CRMO and PFAPA are also represented in this paper. A special thanks to the doctors that are publishing, and also sharing these types of articles with us, so we can share them with our patient community. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7355083/

This is an interesting article regarding FMF in some children presenting as protracted febrile myalgia syndrome. https://link.springer.com/article/10.1007/s00296-020-04696-0 It is always nice when doctors share articles on twitter, and tag us too! Thank you. #FMF #autoinflammatory #MEFV #familialmediterraneanfever #morethanafever

Today is International Stills Awareness Day! There are a number of organizations, websites and patient communities dedicated to this rare disease that is now classified more as an autoinflammatory disease. Still's Disease can cause life-threatening Macrophage Activation Syndrome (MAS), and some patients can have other serious, chronic and progressive damage, such as complex interstitial lung disease. There are some treatments available, but this is a challenging and difficult... disease to treat, and manage for a number of patients. A few years ago, the Autoinflammatory Alliance collaborated with the Systemic JIA Foundation to add these medically-edited disease information cards for Stills and MAS to our collection of cards for various autoinflammatory diseases to address common symptoms and potential complications, and are used by medical professionals and patients. Stills Disease has other names, such as: Systemic Juvenile Idiopathic Arthritis (SJIA) Systemic-onset Juvenile Idiopathic Arthritis (So-JIA or SoJIA) Adult-onset Stills Disease (AOSD) Here are some organizations that are trying to address the needs for patients with Stills Disease (aka SJIA, AOSD). Systemic JIA Foundation https://www.systemicjia.org ENCA https://www.enca.org Arthritis Foundation https://www.arthritis.org International Foundation for Autoimmune & Autoinflammatory Arthritis https://www.aiarthritis.org/StillsDay There are many patient sites, and patient groups on facebook that you can look for, including this new patient-led site: Still's Disease, the 411 https://sdthe411.com #autoinflammatoryawareness #MyStills #MAS #SJIA #Stills #cytokinestorm #morethanafever #hope4said

Stills Day is on September 7th! Learn more, and get involved in #MySills at the link below: