Autoinflammatory Alliance

Autoinflammatory Alliance We are a non-profit helping all patients with autoinflammatory diseases since 2006. Our former name

Autoinflammatory diseases are often caused by genetic mutations that cause the body to produce inflammation. The symptoms are often present from birth or early childhood for most patients, and are due to a genetic cause setting the body off to have high levels of inflammation that persist throughout the patient's life. They are different from autoimmune diseases, such as Rheumatoid Arthritis, Lupu

s, etc. that are caused by something triggering the body's immune system to attack itself, leading to their disease.

07/20/2025

✨BOSTON CHILDRENS FUNDRAISER✨
We are so proud to collaborate on an exciting event next month! Join us August 23rd, at the Chelmsford Center for the Arts for a talent showcase benefiting the Autoinflammatory Clinic at Boston Children’s Hospital. There will also be a 50/50 raffle, refreshments and performances from Boston Children’s patients and their loved ones.

Looking for some fun International Autoinflammatory Awareness Month clothing? Check out Monkey and Bear Co! They can als...
07/18/2025

Looking for some fun International Autoinflammatory Awareness Month clothing? Check out Monkey and Bear Co! They can also customize items for you. A portion of the sales benefit autoinflammatory disease awareness and other efforts for these rare diseases.

They have helped with events, and even the Times Square NYC billboards for International Autoinflammatory Awareness Month last year, Massachussetts events, and Rare Disease Day billboards and meetups in Times Square too. Thank you! https://www.monkeybearclothing.com/boys-girls?fbclid=IwY2xjawLnuspleHRuA2FlbQIxMABicmlkETFHa2FWMXBtT3I4MFh2REZyAR4Y69qSQAb9JZ0Q3_6EvHh8fK4mcKy9idAY6No-ycswNLQhaqOFJP5wpC9htQ_aem_SiL_t_jTTG98tiq-bgjg2w

https://www.monkeybearclothing.com/product-page/unisex-shine-a-light-retro-tshirt

The 100% cotton unisex classic tee will help you land a more structured look. It sits nicely, maintains sharp lines around the edges, and goes perfectly with layered streetwear outfits. Plus, it's extra trendy now! • 100% cotton• Sport Grey is 90% cotton, 10% polyester• Ash Grey is 99% cotton,...

Stop FMF has collaborated with Sobi Spain for an exciting campaign for the 10th Anniversary of their organization, and I...
07/18/2025

Stop FMF has collaborated with Sobi Spain for an exciting campaign for the 10th Anniversary of their organization, and International Autoinflammatory Awareness Month!

The 2025 slogan is: “Unmask Autoinflammatory Diseases”
A social awareness campaign on autoinflammatory diseases, promoted by the pharmaceutical company SOBI in collaboration with the patient association Stop FMF and Federación Española de Enfermedades Raras (FEDER), seeks to break the silence surrounding autoinflammatory diseases, promote the training of healthcare professionals, and encourage early diagnosis.

The campaign manifesto reflects the importance for those affected of being heard, understood, and treated in a timely manner by the healthcare system and society at large.
You can see Sobi's Spain's collaborative campaign here: https://www.sobi.com/spain/es/desenmascara-las-enfermedades-autoinflamatorias (note the English translation sometimes says autoimmune, but in Spanish it says autoinflamatorias (autoinflammatory) in all areas.)

The objectives of this campaign are:
Raise awareness among the population and health professionals.
Make visible the challenges of those living with Autoinflammatory Diseases.
Promote early diagnosis and access to appropriate treatments.
Promote psychosocial support and recognition of these diseases as disabling in many cases.
How you can give your support
Share the manifesto
Download the mask and take a photo
https://www.sobi.com/sites/sobi/files/2025-07/Manifiesto_desenmascara_las_autoinflamatorias_2025.pdf

Take a photo of yourself wearing the mask and upload it to social media with a message of support for those affected by autoinflammatory diseases.
You can use any of the points from the manifesto. Use the hashtags:

Stop FMF has collaborated with Sobi Spain for an exciting campaign for the 10th Anniversary of their organization, and International Autoinflammatory Awareness Month!
The 2025 slogan is: “Unmask Autoinflammatory Diseases”

A social awareness campaign on autoinflammatory diseases, promoted by the pharmaceutical company SOBI in collaboration with the patient association Stop FMF and Federación Española de Enfermedades Raras (FEDER), seeks to break the silence surrounding autoinflammatory diseases, promote the training of healthcare professionals, and encourage early diagnosis . The campaign manifesto reflects the importance for those affected of being heard, understood, and treated in a timely manner by the healthcare system and society at large.

You can see Sobi's Spain's collaborative campaign here: https://www.sobi.com/spain/es/desenmascara-las-enfermedades-autoinflamatorias (note the English translation sometimes says autoimmune, but in Spanish it says autoinflamatorias (autoinflammatory) in all areas.)

The objectives of this campaign are:
Raise awareness among the population and health professionals.
Make visible the challenges of those living with Autoinflammatory Diseases.
Promote early diagnosis and access to appropriate treatments.
Promote psychosocial support and recognition of these diseases as disabling in many cases.

How you can give your support
Share the manifesto
Download the mask and take a photo
https://www.sobi.com/sites/sobi/files/2025-07/Manifiesto_desenmascara_las_autoinflamatorias_2025.pdf

Take a photo of yourself wearing the mask and upload it to social media with a message of support for those affected by autoinflammatory diseases.
You can use any of the points from the manifesto. Use the hashtags:

07/16/2025

Whether you’re newly diagnosed or have been living with a rare disease for years, join us tomorrow, July 17 at 6 p.m. ET for a virtual community conversation: “Finding Strength in Self-Acceptance.”

👉 RSVP: https://bit.ly/4nEeTXZ

Together with our panelists, we’ll explore how embracing our lived realities can lead to greater emotional well-being, stronger self-advocacy, and more meaningful connections with others. Don't miss this inspiring talk!

This is really special special for all that are undiagnosed, which can be months to years or decades of time. Every rare...
07/11/2025

This is really special special for all that are undiagnosed, which can be months to years or decades of time. Every rare disease patient, including autoinflammatory disease patients have experienced. Please read about Indigo, the new mascot for the Undiagnosed Diseases Network Foundation , dedicated to patients seeking a diagnosis. 💙🤍

🟣 Introducing Indigo the Bunting: Your Songbird ⚪

The UDNF is proud to introduce Indigo the Bunting, a symbol created by and for the undiagnosed community.

We recognize the uncertainty, the unanswered questions, and the emotional weight that can come with living in the space between symptoms and answers. If you are still searching, still meeting with specialists, still being told your story doesn’t quite fit — please know this: you are not alone.

We wanted to give you a meaningful symbol that represents your story and experiences living with an undiagnosed disease.

A symbol to help spark conversation.

A symbol to rally around for advocacy and connection, because you are not alone in this.

Now, there’s Indigo the Bunting, a small songbird with brilliant indigo feathers with shimmering silver-tipped wings and beak. Indigo represents the mystery of undiagnosed diseases, the search for answers, and the hope that science brings.

Use Indigo as a way to share your story, raise awareness, advocate, and connect with others walking a similar path.

🧭 Why Indigo? Why Silver? Why a Bunting?

Indigo was designed with care by the undiagnosed community to reflect the complexity of life without a diagnosis—and the hope of a future that leads to a diagnosis and treatment.

Created by Dana Sayer, UDNF Patient Navigator and our talented visual storyteller, Indigo carries the heart of this work. As Dana passionately said, “I want to see my participants take off and soar.”

🌌Indigo buntings for the path of uncertainty and discovery.

In the shadows, male indigo buntings appear black or gray—nearly invisible. But when the sunlight hits just right, their feathers shine a brilliant indigo.

Even when answers aren’t visible, it doesn’t mean they aren’t there. Sometimes it just takes the right light—or a new perspective—to see them.

Indigo Buntings are nocturnal navigators, migrating by starlight, guided by patterns they’ve never seen before. Even without a map, they find their way.

When there is no map, they follow the stars and create their own path.

Much like undiagnosed patients and their doctors, who often end up forging their own path in the search for a diagnosis.

🟣Indigo for the mystery.

Indigo sits between blue and violet on the color spectrum, mirroring the uncertain space between symptoms and diagnosis.

Indigo is often described as a color that’s seen differently by everyone. Some will see blue. Some will see purple. Some will see the in-between indigo.

Much like how symptoms are interpreted, missed, or argued over when looked at through different lenses.
Look around in nature, and you’ll have a hard time finding indigo. It’s one of the rarest colors in nature.
Some undiagnosed individuals may spend years or even a lifetime looking for their diagnosis because it is so rare that they are a patient of one.

⚪Silver for the science, progress, and hope.

Silver evokes a feeling of modernity, innovation, advancement, and the future.

Silver represents the science and research that moves us forward.

There is a silver lining in the continued research advancing precision medicine, genomics, and diagnostics to give faster answers for the undiagnosed.


07/04/2025

Wishing all in the USA a happy and flare-free Independence Day!

07/04/2025

🔶Nuevos encuentros Yo también Soy Stop FMF
📇Lunes 7-7-25
⏰10:30h
📇Lunes 14-7-25
⏰10:30h
Esta acción está a cargo de Ana Collado. Directora y Psicóloga de Stop FMF
Te esperamos‼
Para cualquier más información sobre este tema 661 28 68 91 o psicologia@fmf.org.es

06/29/2025

Today is National PTSD Awareness Day

PTSD isn’t always visible. You may seem fine on the outside while carrying deep, invisible wounds. We want you to know: we see you, we believe you, and you’re not alone.

For those navigating the uncertainties of undiagnosed and ultra-rare diseases, the emotional toll can be just as heavy as the physical. At UDNF, we understand that the journey to answers isn’t just medical—it’s deeply personal and often traumatic.

Today and every day, we stand with individuals and families affected by PTSD. We advocate for compassionate, whole-person care that supports mental and emotional well-being alongside physical health.

Let’s continue to break the stigma and create a community rooted in empathy and understanding.

Autoinflammatory patients with joint pain are also able to receive a JA power pack from the Arthritis Foundation. These ...
06/29/2025

Autoinflammatory patients with joint pain are also able to receive a JA power pack from the Arthritis Foundation. These are really helpful, especially the warming bear for sore joints

A huge thank you to Alpha Omicron Pi Fraternity for your continued support of kids with juvenile arthritis! 💚 Because of you, our JA Power Packs are reaching families across the country — providing comfort, resources, and a reminder that they’re not alone on this journey. Your dedication is making a powerful difference. We’re so grateful for our partnership! https://arthr.org/3ApgSLn

For French patients having colchicine access issues, please read this post, and follow Filière des maladies Auto Immunes...
06/29/2025

For French patients having colchicine access issues, please read this post, and follow Filière des maladies Auto Immunes et Auto Inflammatoires Rares FAI²R for future updates

[FAI²R vous informe]

Il y actuellement à des difficultés d’approvisionnement en colchicine dans les officines de ville. Des mesures nationales ont été mises en place afin d’assurer la continuité du traitement pour les patients concernés.

🆕 Importation de colchicine fabriquée en Italie
Vous pourrez donc recevoir lors de votre prochain passage en pharmacie une boîte de colchicine d’origine italienne. Bien que l’emballage puisse être différent, le médicament et son dosage sont strictement identiques à ceux que vous prenez habituellement. Vous pouvez poursuivre votre traitement en toute sécurité.

💡 Que faire si votre pharmacie ne dispose pas du médicament ?

Invitez votre pharmacien à consulter le site de l’ANSM vigirupture.fr, qui recense les pharmacies disposant encore de stock.

N’effectuez pas de stock personnel de colchicine à domicile : cela risque d’aggraver les tensions et de priver d’autres patients de leur traitement.

✅ Nos recommandations :

Achetez votre traitement dans votre pharmacie habituelle

Anticipez le renouvellement de vos ordonnances, pour laisser à votre pharmacien le temps de commander le médicament.

🔍 Où trouver de la colchicine près de chez vous ?
Utilisez le site www.quellepharmacie.fr

Tapez "colchicine" dans la barre de recherche

Indiquez votre localisation

Le site vous indiquera les pharmacies proches disposant du médicament

☎️ Avant de vous déplacer, pensez à appeler la pharmacie pour confirmer la disponibilité.

Nous espérons que cette situation restera temporaire et que l’approvisionnement reviendra à la normale rapidement !

Passez une bonne journée 🙂

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