ERDC - Eosinophilic & Rare Disease Cooperative

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.

07/02/2026

A study just confirmed what the MG community has known for a long time: how supported you feel matters as much as how severe your symptoms are.
Researchers found that anxiety and depression in myasthenia gravis aren't driven primarily by clinical disease scores. The bigger factors? Quality of life — how much the disease limits daily activity — and social support.
At ERDC, we built a Personalized Quality of Life Tool for exactly this reason. Not a cookie-cutter checklist — something actually yours, designed to help you track how MG is affecting your life in ways that matter to you.
🔗 [https://www.eosinophilraredisease.org/quality-of-life-and-social-support-as-key-determinants-of-anxiety-and-depression-in-myasthenia-gravis-evidence-from-a-chinese-cohort/ ] |

07/01/2026

We just ran across a great free tool built for gMG symptom tracking. It is practical, easy to use, and it actually captures the data that matters to us! There is no sales pitch buried inside, just a genuine tool for peace of mind.
It is on the app stores (google and apple) and is called "TrackMG"
Thanks Johnson & Johnson for building something that shows you understand what people with gMG are actually navigating.

06/30/2026

This work is built by and for people who know what it means to navigate the hard days. It reaches further every time a partner chooses to walk alongside us.

Thank you, Johnson & Johnson.

The ERDC team and the 130,000 people across all of our rare disease channels thank you for making HEAT Kits, education, policy work, and more possible.

We hear you. We see you. Because we are you. 💚

06/26/2026

Behind every HEAT Kit is a person who needed to feel a little less alone. Behind every step forward is a partner who believed our community was worth showing up for.

Thank you, and

The ERDC team and the 130,000 people across all of our rare disease channels thank you for making HEAT Kits, education, policy work, and more possible.

We hear you. We see you. Because we are you. 💙