Biologics come with a lot of myths — that they’re just stronger pills, that they wipe out your immune system, that starting one traps you forever, even that they’re a kind of vaccine. In this final session of Understanding Biologics, we clear the air. We’ll separate fact from fiction in plain language, explain why a…
Watch the livestream and view the slide deck to learn about biologics from Dana Saffel, PharmD, CPh, BCGP, FASCP Here are the slides: Many thanks to our partners who make livestreams like this possible!
Ever had a doctor say “biologic” and just nodded along, even though you had no idea what they meant? Join us August 20 for Session 1 of our three-part Biologics series: Biologics Overview. Our expert guide is a pharmacist, Dana Saffel, who breaks it all down in plain language — no jargon, no rushing. We’ll cover:🔹 What a biologic…
As a part of our public policy work, we regularly sign onto policy position letters with dozens of other organizations about pending policy issues. Additionally, we create our own letters to state more fully the potential impact of policy on our community. The Senate Finance Committee is proposing a variety of changes with a goal…
We know many in our community are hearing news about Tavneos (avacopan) and questions about its safety, specifically regarding liver toxicity. We want to share what we as a patient organization believe and support: We support patients and their right to informed choice. Every person’s health situation is unique. Decisions about treatment should be made between patients and their…
The slides in this post go hand-in-hand with our Medicare video series, created to help you find the plan that fits your unique needs. For clear, step-by-step guidance through the complexities of Medicare — from Parts A through D and beyond — visit our Medicare for Rare Disease page. You’ll find practical tips, real patient…
For people living with rare diseases, accessing the right medication can sometimes feel like navigating a maze. One common challenge arises when a medication is approved for a new indication. A new indication means that the FDA has officially approved a medication to treat a condition it wasn’t originally prescribed for. This often happens after…
Getting healthcare covered—especially for new medications or procedures—can feel overwhelming. But remember it’s a process, and a “no” from your insurance company is not always final. Also remember if you get a letter in the mail that says it is denied and may not be on formulary, read the whole letter. It is often about…
This public policy live stream will provide you with an overview of the Safe Step Act as well as the upcoming changes to medicare part B that will impact access to infusions. Additionally, we cover how to best contact your legislators and what matters when you talk with them! Join us! Get Active!
In this candid and insightful conversation, a patient and a rheumatologist dive into some of the most important—but often overlooked—topics in chronic illness care.Together, they explore how to talk with your doctor about what really matters to you, including quality of life concerns, pain, fatigue, mobility, energy, and the emotional impact of chronic disease. They…
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