Why the Phrase “Lived Experience” Doesn’t Sit Well With Me In the world of rare disease and chronic illness advocacy, certain phrases catch fire fast. They show up in research papers, nonprofit materials, conference presentations, and patient engagement efforts. Everyone starts using them. And somewhere along the way, nobody stops to ask whether they’re actually…
FOR IMMEDIATE RELEASE Grand Rapids, MI — February 26, 2026 — Eosinophilic & Rare Disease Cooperative (ERDC) is playing a pivotal role in advancing policies that improve medication research, development, and real-world access for people living with rare diseases. Serving individuals and families affected by more than 40 rare diseases — with a primary focus…
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…
We hope this article, written by the person who works with Community Engagement and lives with EGPA, will help you feel less alone with brain fog! This article was published on ANCA Vasculitis News in the column, Truth Be Told. Check it out and subscribe to ANCA Vasculitis News!BRAIN FOG WITH CHRONIC DISEASE IS NOT…
Dr. Jessica Most, Pulmonologist and Medical Director for Eosinophilic Disorders at AstaZeneca talks about the unique mechanism of action for Fasenra (benralizumab) in the treatment of EGPA. She also covers dosing, who is eligible and how to talk with your doctors about new treatments!
Just wanted to inform everyone who has a rare disease, or loves someone with a rare disease, that there is an opportunity to make a difference. When it comes to research for medications for our rare diseases we can have a voice. Background – the Problem: Back in the 1980’s Congress passed the Orphan Drug…
There is a Save Rare Treatments task force that is working on saving the incentives for pharmaceutical companies who create the research and medications for our rare diseases. These incentives were accidentally overlooked in the recently passedInflation Reduction Act.Without getting too much in the weeds – we’re trying to get Congress to pass the Orphan…
Healthcare. There’s something in that word that brings up a visceral and usually unpleasant sensation in the pit of our stomachs. And. It’s obviously essential for the survival of people with rare and chronic diseases. Years ago my wife started an organization to help people with Parkinson’s Disease and their care systems. She was…
We use cookies to improve your experience on our site. By using our site, you consent to cookies.
Manage your cookie preferences below:
Essential cookies enable basic functions and are necessary for the proper function of the website.
These cookies are needed for adding comments on this website.