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

Today is National Caregiver's Day. Thanks to all who are caregivers in our autoinflammatory and immunedysregulatory comm...
02/20/2026

Today is National Caregiver's Day. Thanks to all who are caregivers in our autoinflammatory and immunedysregulatory community, and to all caregivers for anyone with any health condition. You are important, and appreciated. 🧡

02/20/2026

The U.S. Food and Drug Administration's virtual event will take place on Feb. 23 and showcase collaboration with rare disease patient communities and the latest innovations guiding FDA decisions.

Register here: https://bit.ly/4abBNRD

02/20/2026

Have your say in the Drug Price Negotiation Program. Sign up for virtual patient roundtables or the livestreamed clinician town hall to share your experiences and help shape pricing for these drugs: https://www.cms.gov/engagement

Drugs under discussion include: Anoro Ellipta, Biktarvy, Botox, Cimzia, Cosentyx, Entyvio, Erleada, Kisqali, Lenvima, Orencia, Rexulti, Trulicity, Verzenio, Xeljanz, Xolair, and Tradjenta.

02/20/2026
02/20/2026

🌍 300 million people. One global community.

Rare diseases affect millions, yet research and funding is limited. Funding rare disease research is not only a moral imperative, it’s a smart, forward-looking investment. Discoveries in rare disease science often pave the way for treatments in cancer, neurology, and beyond, sparking progress across all of healthcare.

⚖️ Equality gives every disease the same level of funding.
💜 Equity for rare diseases means investing more where it’s needed most.

👉 Learn more about equity: https://go.rarediseaseday.org/equity

02/20/2026

📊 Rare diseases affect 5% of the global population, that’s over 300 million people. Yet access to diagnosis, care, and treatment still depends on where you live.

Around the world, disparities in healthcare systems, specialist availability, and coverage mean that too many people with a rare disease go without the care they need.

⚖️ Equality would mean offering everyone the same system.
đź’ś Equity for rare diseases means acknowledging that not everyone starts from the same place, and committing to policies and investments that close the gap.

👉 Learn more about equity: https://go.rarediseaseday.org/equity

02/20/2026

The National Institutes of Health (NIH) is hosting 2026 on Feb. 27, 2026. We invite patients, patient advocates, caregivers, health care providers, researchers, trainees, students, industry representatives and government staff to join us! Let’s unite in raising awareness & building connections in the community.

Register today and join us virtually or in person to learn more about progress in rare diseases research: https://go.nih.gov/C213uLm

02/20/2026
02/20/2026

Ahead of , NORD is going to Capitol Hill to highlight how patient advocacy drives innovation for the 30 million Americans living with rare diseases. You can join us!

Fewer than 5% of the 10,000+ known rare diseases have an FDA-approved treatment — but progress happens when patients, researchers, investors, and policymakers work together. We’re going to demonstrate how.

Join our Congressional briefing: “Patient Advocacy Driving Innovation for People Living with Rare Diseases”

đź“… February 24, 2026
🕤 9:30–11:30 AM
📍 Capitol Visitor Center
🥪 Box lunch provided | Open to the public

Hear from leading voices in research, policy, investment, and patient advocacy:
• Pamela Gavin, CEO, National Organization for Rare Disorders
• Ada Hamosh, MD, MPH, FACMG, Johns Hopkins Medicine NORD Rare Disease Center of Excellence
• Rohini Kosoglu, Venture Partner, Fusion Fund
• Theresa Strong, PhD, The Foundation for Prader-Willi Research

Innovation starts with advocacy. We hope you’ll join us. RSVP here: https://bit.ly/4rRdaQa

02/15/2026

Happy Valentine's Day! Extra love for all those who are supporting our organization with donations, volunteer work sn other helping people with rare autoinflammatory and immunedysregulatory diseases. 🧡

Get your tickets soon for this event/fundraiser! Come celebrate Valentine’s Day with the PFAPA Fun Squad inspired by K-P...
01/30/2026

Get your tickets soon for this event/fundraiser! Come celebrate Valentine’s Day with the PFAPA Fun Squad inspired by K-Pop Demon Hunters and Saja Boys!

Saturday, February 14, 2026 from 10 am to 1 pm EST
Atlantic County 4-H Fairgrounds
3210 NJ-50, Mays Landing, NJ 08330

Meet & Greet characters with photo ops!!
Wear your favorite Demon Hunter and Saja Boy inspired costumes!!

DJ, dancing, face painting, tinsel fairy hair and hair art, crafts, sensory play, games and lots of fun!!

Lunch served at 11:30am until 12:30pm.

This event is geared for children 8 and under. A parent or guardian must be present at all times at the event, and also buy a ticket. No unattended children will be permitted to attend alone.

Tickets are $30 for adults, and children. Tickets are $15 for children under 2 years of age.

Get your tickets here:
https://givebutter.com/valentineskpop

This event is hosted by the Atlantic County 4-H Youth Program, Autoinflammatory Alliance. and the PFAPA FUN SQUAD. This event is a fundraiser for the Autoinflammatory Alliance and Atlantic County 4H Youth Program.

Valentine’s Day Kid's Party inspired by K-Pop characters w/ the PFAPA Fun Squad, NJ. Lunch & fun! Benefitting 4-H & the Autoinflammatory Alliance.

The study is still in need of more PFAPA patients: Attention all with PFAPA, or those that had it in the past! The NIH C...
01/22/2026

The study is still in need of more PFAPA patients: Attention all with PFAPA, or those that had it in the past! The NIH Clinical Center is still seeking patients to participate in their PFAPA study from home. You or your child can submit a saliva sample for testing for their study to find the cause for this disease. (International patients welcome too.) Also, if you have PFAPA, and are getting your tonsils and/or adenoids removed, please contact them to have them properly prepared to ship for analysis. International patients are welcome. Contact Mary Bowes RN at 240-408-0970 or email mary.bowes@nih.gov. Thank you. Please share this too!

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San Francisco, CA
94159

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