Autoinflammatory Alliance

Never forget. We pause today to honor those we lost, the heroic helpers that rushed in to save others or helped others while inside the buildings or planes, and to those that stayed to continue serving for many weeks and no the afterwards. And all that houses stranded travelers globally. Thank you to the many heroes, all the families the many across the country and around the world that have been forever changed by the tragic acts and losses of loved ones on 9/11/01. So many first responders are still fighting through the health effects from the exposure to the debris, or have died due to the Thanks to all who are still serving and helping others.

For our patients with Behçets disease, the American Behcet's Disease Association - ABDA has an upcoming event and fundraiser. 💙🧡

Walk registration is now open! We look forward to seeing you in October!

To register for our in-person walk please visit: https://secure.givelively.org/event/american-behcet-s-disease-association-abda/steps-for-hope-abda-s-behcet-s-awareness-walk

To register for our virtual walk please visit: https://secure.givelively.org/event/american-behcet-s-disease-association-abda/steps-for-hope-abda-s-virtual-behcet-s-awareness-walk

To donate to our walk campaign to help support the ABDA please visit: https://secure.givelively.org/donate/american-behcet-s-disease-association-abda/steps-for-hope-abda-s-journey-to-behcet-s-awareness-campaign

Our friends at Kaila's Komfort-CRMO are gearing up for CRMO Awareness Month, and have their big fundraising 5 Ks coming up to support their wonderful CRMO support surprise boxes customized for CRMO patients. If you have CRMO, please help them out. October is CRMO Awareness Month. If you have CRMO, or your child, visit their site to request their care packages. 💜🧡

Have you been thinking about participating in the CRMO Awareness Virtual 5K, but are still on the fence about registering? There are only FIVE days left to register to guarantee a race packet (after the 12th, we will still do our best to send your requested shirt size).

We know you really want this cool race shirt designed by CRMO Warrior, Anna!! This, and a matching event glow-in-the-dark bracelet, are included in the price of your registration (they will be mailed to the address you provide prior to the event date).

If that’s not reason enough, we are enjoying sending smiles to people this weekend, and will randomly pick FIVE people who register by 11:59 p.m. (PT) on Sunday to be mailed some cool CRMO Awareness merch!!!

Help bring awareness to our rare disease, support important CRMO research, and help us continue our mission of supporting CRMO Warriors and their families around the globe! We have a ways to go to reach our goal of $50,000 (we are currently at $9,000), but I know everyone will join together and make this happen!!

Don’t be left out; register today: http://getmeregistered.com/CRMOAwarenessWalkAThon

The Autoinflammatory Alliance is excited to announce that we've been selected as a 2024 Global Advocate Grant recipient by the RAREis program from Amgen!
We’re motivated to continue making a positive impact for the rare disease community by expanding our efforts in and Immunedysregulatory education and advocacy as we work to address the needs of all those impacted.
Learn more about the here: https://bit.ly/3Z6sfSP
We cannot thank and Amgen enough for this incredible grant opportunity that will make a big difference. Thanks so much!

🍪TOUGH COOKIES 🍪
Save the date! August 30th from 5pm-8pm BATV is hosting a special event! Enjoy cookie decorating, crafts and more as we unveil an Art Installation in collaboration with for
You won’t want to miss this all ages, community event!!

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

We cannnot thank everyone from the Boston Children's Autoinflammatory Diseases Clinic for making this awareness event at the hospital and lighting of the Hale Center in the evening so special. We appreciate this support for International Autoinflammatory Awareness Month, and it means a lot to our patient community to see all these lightings, events, and awareness efforts all around the world. Thank you all.🧡

Thank you Boston Children's Autoinflammatory Diseases Clinic Doctors and allied healthcare professionals for coordinating these wonderful awareness events, and to the Hale Center and
Boston Children’s Hospital for helping raise awareness on Tues, August 27th, and also having a table for gear for patients in the lobby of the hospital too! 🧡

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 Hôpital 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://us02web.zoom.us/rec/share/CgKLYBVpjQbwlSHEgatYXOLhXr1iv7Lz4262hMBg3SDK6Tvkiv7sjm63dUC1zSKE.HA0W5AWONNU4v4wP?startTime=1724511889000

Video Conferencing, Web Conferencing, Webinars, Screen Sharing Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom Rooms is the original software-based conference room solution used around the world in board, confer...

There are still spots available for the free, virtual program on Saturday, August 24th! Translation available. https://www.eventbrite.com/e/994808889167?aff=oddtdtcreator

Int'l Autoinflammatory Awareness Month 2024: Patient Care & Advocacy Learn about adult and pediatric care for autoinflammatory diseases, research networks, standup comedy, patient advocacy plus breakout rooms

This paper published earlier in 2024 is really helpful for understanding eye involvement in a number of autoinflammatory diseases, from CAPS, TRAPS, MKD/HIDS, TRAPS, FMF, Blau, Aicardi-Goutieres, NLRC4, SAVI, PRAAS/CANDLE, HA20 (TNFAIP3), RELA, XIAP, VEXAS, Behçets, Stills/SJIA/AOSD, CRMO and more new and known diseases. Look at the helpful tables, and the narrative info for each disease. https://www.frontiersin.org/journals/ophthalmology/articles/10.3389/fopht.2024.1337329/full

Frontiers | Update on ocular manifestations of the main monogenic and polygenic autoinflammatory diseases Autoinflammatory diseases include disorders with a genetic cause and also complex syndromes associated to polygenic or multifactorial factors. Eye involvemen...

📢 Calling All Aspiring Rheumatologists in Africa!

🌍AFLAR and EULAR are enhancing rheumatology training in Africa with free access to high quality online courses starting from October 2024.

🗓️ Application Deadline: 15 September 2024

Learn more and apply here👉https://pulse.ly/8gf5e5rweq

Please take a moment to go through this action effort page and sign the petition to Fix Prior Authorization issues in the US. Thanks.

The current process not only undermines your physician’s opinion, it also impacts your access to care and puts your health at risk. In fact, 94% of physicians report that prior authorization sometimes, often or always delays access to necessary care. It’s time to turn this problem around.

Learn about our efforts to . bit.ly/3TS7M1g

These are great resources for anyone dealing with rheumatic diseases.

As you head back to school, remember, we're here for you. You can find resources and support for a successful year here: https://arthr.org/3WJVZCh

Registration is open for the Saturday, August 24th virtual International Autoinflammatory Awareness Month program! https://www.eventbrite.com/e/intl-autoinflammatory-awareness-month-2024-patient-care-advocacy-tickets-994808889167?aff=oddtdtcreator with translation and closed captioning. This program will cover a lot for adult and pediatric autoinflammatory disease patients, autoinflammatory networks and collaborations to help doctors to better help patients, how to advocate to legislators to improve support for patient needs and research, and a wonderful comedy routine by Alice Payne, a rising comedian and autoinflammatory and rare disease patient advocate. Plus a showcase of events throughout the month, lightings, and other special segments to be announced.

Full details below:

1. Professor/Dr Sophie Georgin Lavialle is a Professor of Internal Medicine and Clinical Immunology at Sorbonne University, Tenon hospital, Paris , France. She is an autoinflammatory expert that will speak about adult autoinflammatory diseases, in addition to sharing her advocacy work on social media and video to increase awareness and understanding of these diseases. She is also the head of the adult French Reference Center for Autoinflammatory Diseases and Amyloidosis (CeRéMAIA) and she is involved in collaboration with other experts within CeRéMAIA, FAI2R and ISSAID and other societies.
-Question and Answer session will follow.

2 . Professor/Dr Erkan Demirkaya, is a pediatric rheumatologist and professor at Western University of Ontario, Canada who is leading research and pediatric care for autoinflammatory diseases. He is the current President of the International Society of Systemic Auto-inflammatory Diseases (ISSAID), and he is also involved in PRINTO, and is leading efforts for the Translational Autoinflammatory Resaarch Network (TARN) that is working on addressing the unmet need of patients, the need for more approved and targeted treatments and research for autoinflammatory diseases.
-Question and Answer session will follow.

Around 9:00 am PDT (12 noon EDT, 1800 Paris time)
3 . We are pleased to have Alice Payne, a rising comedian and rare autoinflammatory disease advocate treat us to a special comedy segment in our program! We will also have her share how she advocates for these rare diseases. She was interviewed in 2020 for the Dr Raj Podcast to share about her autoinflammatory disease (the Muckle-Wells form of CAPS to help teach doctors and others, for podcast #5, titled, "Laughter is the best medicine (besides medicine)."

-Question and Answer session will follow.

4 . Amanda Panko, an autoinflammatory patient advocate has gotten involved in legislative efforts for rare diseases, and she will share about her path to policy advocacy, and how others can get involved.
-Question and Answer session will follow.

5 . A fun showcase of photos, videos and highlights from various global events and lightings of landmarks, buildings and monuments from around the world, and messages of hope and inspiration will be shared.

6 .At the end of the presentations, there will be at least 30-45 minutes of breakout rooms for a number of autoinflammatory diseases and topics for all will be at the end of the program, and more! We will keep the rooms open as long as there is interest.
The breakout rooms are NOT recorded.

Int'l Autoinflammatory Awareness Month 2024: Patient Care & Advocacy Learn about adult and pediatric care for autoinflammatory diseases, research networks, standup comedy, patient advocacy plus breakout rooms

👻When you’re ready for spooky season, but it’s still Autoinflammatory Disease Awareness Month!

Spain is shining a light on autoinflammatory diseases for International Autoinflammatory Awareness Month! So beautiful. 🧡 A special thanks to all involved, and to Stop FMF for organizing in Spain

🧡AGOSTO, Mes Internacional de Concienciación de los Autoinflamatorios.

El lema del 2024 internacionalmente sigue siendo en torno al acceso al diagnóstico y tratamiento. El retraso en el diagnóstico y el acceso a tratamientos desgraciadamente siguen siendo desafíos a los que los pacientes tienen que enfrentarse
+Diagnóstico +Tratamiento es +Salud Para los Autoinflamatorios

Síguenos en las redes y ayúdanos a generar conciencia 💪💪🧡🧡

ES: 📣 Recuerda que este mes de agosto se celebra el 🧡 𝗠𝗲𝘀 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝗰𝗶𝗼𝗻𝗮𝗹 𝗱𝗲 𝗖𝗼𝗻𝗰𝗶𝗲𝗻𝗰𝗶𝗮𝗰𝗶𝗼́𝗻 𝗱𝗲 𝗹𝗼𝘀 𝗔𝘂𝘁𝗼𝗶𝗻𝗳𝗹𝗮𝗺𝗮𝘁𝗼𝗿𝗶𝗼𝘀 🧡

Desde apoyamos esta campaña que organiza Stop FMF, asociación que forma parte de nuestra plataforma y de nuestro comité asesor.

¡Participa tú también! 👇
https://www.youtube.com/watch?v=cB1P2MVVyHw