ERDC - Eosinophilic & Rare Disease Cooperative

09/07/2026

Same medication. Same dose. A 100x price difference depending on where you take it.

Take it at a hospital, and you're likely paying steeply inflated costs. Many hospitals get these meds at a deep discount through a program called 340B — but too often, that discount never reaches the people who need it. Instead, they're the ones who get billed 100x the actual cost.

We need 340B reform. Now.
Check out ERDC - Eosinophilic & Rare Disease Cooperative Rare Disease Medical Debt report at https://www.eosinophilraredisease.org/medical-debt-in-rare-disease/

09/03/2026

"For years I only rested when my body forced me to. Now I collapse on the couch, furious at myself for "letting it get that bad." What changed things was a shift Bernhard writes about: rest as prevention, not punishment. Not 'I've earned a break' after pushing too hard, but building the break in before the crash even shows up. Yesterday I had every reason to keep going — deadline, dishes, a text I hadn't answered. I laid down for twenty minutes instead. The deadline got met. The dishes waited. And I didn't spend today paying interest on yesterday's overdraft."
Living with rare disease & chronic illness, one honest day at a time.
-RD

09/02/2026

Please check out and share the ANCA Vasculitis Decision Tree — the first free, interactive tool of its kind, built to walk people through diagnosis, care-team building, and ongoing monitoring in plain language! Explore it here: www.RareDiseaseDecisionTree.org

No login. No cost. No branding. Just a map through a healthcare system not designed for them .

This tool was developed by a steering committee convened by Eosinophilic & Rare Disease Cooperative and included Dr. Lindsay Lally, Dr. Dominick Sudano and Dr. Judson Pollok, Rita Martins, Vasculitis Foundation, the Rare Disease Diversity Coalition, the American Kidney Fund, patients, care partners and more— along with support from Amgen and AstraZeneca.

08/27/2026

Some mornings I wake up already knowing what kind of day it's going to be, before I've even sat up. Today my body picked stiff joints and a used-up head just from the effort of thinking about getting dressed. Eight years ago, I would have fought that. Powered through, pretended, apologized to myself for not being further along by now. I'm rereading Toni Bernhard's book on living with chronic illness this week, and the idea I keep circling back to is simple: today doesn't need to look like yesterday, or match some plan I made when I felt better. It just needs to be met as it is. So that's what I'm doing. Slow morning. Coffee in bed. No apology attached."
Living with rare disease & chronic illness, one honest day at a time.

08/20/2026

We have been reading through Toni Bernhard, author's work, and if you haven't read her first book, "How to Be Sick", we can't recommend it enough — it's one of the few books that speaks the truth about rare and chronic illness without softening it, and it's made us feel less alone and truly seen.

We're now working through her second book, "How to Live Well with Chronic Pain and Illness". It is just as honest.

Starting next week, we're sharing some of its themes that have meant the most to us. Special thanks to Amgen for your support in this awareness project and for all you do to help people living with , like
Living with chronic illness, one honest day at a time.

07/18/2026

07/14/2026

MG treatment has changed more in the last eight years than in the previous several decades combined.
That gap — between what exists and what people actually receive — is exactly why ERDC does what it does.
Read the full summary on our site, including what these treatments are, how they work, and the questions worth bringing to your next appointment.
🔗 https://www.eosinophilraredisease.org/myasthenia-gravis-in-2025-five-new-things-and-four-hopes-for-the-future/

Below is a summary of the research article. A WHOLE LOT HAS HAPPENED SINCE 2016! This article explores a decade of research for MG. And wow, it has been a busy decade! Why This Article Matters A team of neurologists from the University of Oxford reviewed everything that has changed in the treatment....

07/10/2026

We love TrackMG — a free app from Johnson & Johnson. Once a week it sends a gentle reminder and walks you through a few quick check-ins: how MG is affecting your daily activities, your fatigue, and whether your symptoms feel okay to you right now. Add your own notes, and it builds one easy report to share with your doctor — only if and when you choose. Your data stays yours.
Thank you, Johnson & Johnson, for making something this simple and easy to use. 💙

07/07/2026

"The medics LOVED it. They said for the first time they could look and know what to expect."
That's Jennifer. In a hospital bed. Hooked up to machines. And she brought a HEAT Kit.
ER doctors at two different ERs stopped to show it to their entire staff. They came back to borrow it because they needed more information.
That's what a free HEAT Kit can do — not just for the person in the bed, but for every provider walking into that room.
Disease-specific. Built by people who've been in that bed themselves.
Currently available for
Free at HEATKit.org
Thank you to the partners who make this possible: Johnson & Johnson

07/03/2026

One year ago, the ORPHAN Cures Act became law.
It fixed a broken incentive that punished drug developers for helping more than one rare disease community. Now, research into treatments for the 30 million Americans living with rare diseases keeps moving forward. ERDC - Eosinophilic & Rare Disease Cooperative was proud to stand with the Save Rare Treatment Taskforce to help make this happen.
We don't chase cures. We clear paths.
We hear you. We see you. Because we are you.