Medical bracelets are not just for fashion; they can help save your life. Some people think these bracelets are a bother to have to wear constantly, but when you’re in a crisis, it can help tell the paramedics how to treat you right away. In the past, there were limited options for purchasing bracelets. Today,…
Read MoreProgress on Insurance Prior Authorizations: What the New Industry Pledge Means for Patients
We know how critical timely access to care is—especially for those living with rare and chronic diseases like APS Type 1. That’s why we’re encouraged by a new commitment made this week by many major health insurance companies to reduce unnecessary delays in care caused by prior authorization (PA) processes. A New Commitment to Change…
Read MoreAdvocacy Opportunity: Big Beautiful Bill
We are asking for your help, once again, in collectively responding to proposed legislation that will negatively impact our APS Type 1 community. The Senate is currently debating a reconciliation bill (aka the “One Big Beautiful Bill Act”) passed by the House last month. The bill contains devastating cuts that will negatively affect access to…
Read MoreDave’s Research Corner: Updates on JAK Inhibitor Research
In the last year, the NIH has written and presented three works detailing their research on using JAK inhibitors (targeted immunosuppressants) to treat APS Type 1 manifestations. The results are promising for our community, and the NIH team is continuing their efforts to advance the research. We are grateful for their work and look forward to…
Read MoreWords of Encouragement from Emily O’Brian as She Completes NIH Clinical Trial
As all other people living with APS Type 1, my journey has not been linear, and there have been lots of ups and downs. Having a rare disease is hard because one day one thing can get better, but the next day something else can get worse. Leaning on my faith through this disease has…
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Foundation Supports NIH Funding
The APS Type 1 Foundation recently wrote to the Senate Appropriations Committee in support of robust funding to the National Institutes of Health leading up to the recent committee hearing entitled “Biomedical Research: Keeping America’s Edge in Innovation.”
Read MoreNow Available: APS Type 1 Merch
We are thrilled to announce that we have a new online storefront for APS Type 1 merch! We wanted to give a lot of options and of course, give everyone a soft great material. We worked hard to find a great distributor to make the best quality product for our community and it has paid…
Read MoreImmune Deficiency Foundation Profiles Our Very Own Gaby Talarico
On April 10, 2025, the Immune Deficiency Foundation featured Gaby’s APS Type 1 story, one that many of us know all too well. Thank you, Gaby, for sharing your story and helping to raise awareness of APS Type 1. Together, we hope to accelerate the time to diagnosis.
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Congratulations to Pablo Ramírez
Congratulations to Pablo Ramírez for the honor of being selected by Rare Diseases International as a member of its 2025 Youth Leadership Programme. The RDI Youth Leadership Programme is designed to engage and empower young people within the rare disease community, ensuring their perspectives are represented in global discussions and decision-making processes. It provides a platform…
Read MoreApply Now for the #RAREisScholarship
The #RAREisScholarship is available for any rare disease patient who is age 17 or older and has a US residency. This scholarship is not degree specific or dependent on a four-year of two-year degree program. Students must be enrolled, or planning to enroll, in an accredited course(s) for Fall 2025. The scholarship application is open…
Read MoreWe are proud to support the establishment of a Montana Rare Disease Advisory Council
In collaboration with NORD and other rare disease advocacy groups, we are proud to support HB943, which would establish a Rare Disease Advisory Council in Montana. Read the letter of support below.
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