ERDC - Eosinophilic & Rare Disease Cooperative

ERDC - Eosinophilic & Rare Disease Cooperative ERDC develops & distributes Hospital & Emergency kits for patients & loved ones with rare diseases.

You wouldn't think twice about getting a second opinion on your AC unit.But somehow, when it's your health — your diagno...
06/04/2026

You wouldn't think twice about getting a second opinion on your AC unit.
But somehow, when it's your health — your diagnosis, your treatment plan, your life — it feels like betrayal.
It isn't.
For people living with rare and chronic disease, getting the right care isn't just important. It's everything. And sometimes that means a second set of eyes, a different specialist, a new perspective on what's been tried and what hasn't.
Our Rare Candor episode is about exactly that — the value of a second opinion.
🎧 https://open.spotify.com/episode/1t3b9chQAbjy6D10QR67qN?si=6-hI27ITR4i8McrVBK6Cqw
-RD

Have you ordered your Hospital Emergency Advocacy & Treatment Kit (HEAT Kit) for GPA or MPA on www.ancaresourcehub.com?T...
05/30/2026

Have you ordered your Hospital Emergency Advocacy & Treatment Kit (HEAT Kit) for GPA or MPA on www.ancaresourcehub.com?

The ANCA Resource Hub, created by Amgen offers free support resources, including access to the HEAT Kit. The HEAT Kit is created and distributed by Eosinophilic & Rare Disease Cooperative.

Sign up today at www.ancaresourcehub.com.

Nobody warns you about this part — and that almost no one in a clinical setting will bring up first.We went there. Our l...
05/26/2026

Nobody warns you about this part — and that almost no one in a clinical setting will bring up first.
We went there. Our latest Rare Candor episode features s*x therapist Jessica Szysmas. Because not fully addressing this isn't protecting anyone. It's just leaving people without the tools they need to live fully.
🎧 https://open.spotify.com/episode/3tqrB3xJ2M3ie3xx5RD2uE?si=HCp0F7LoSNKYi5L7sR1dbw
-RD

Have you ordered your Hospital Emergency Advocacy & Treatment Kit (HEAT Kit) for GPA or MPA on www.ancaresourcehub.com?T...
05/23/2026

Have you ordered your Hospital Emergency Advocacy & Treatment Kit (HEAT Kit) for GPA or MPA on www.ancaresourcehub.com?

The ANCA Resource Hub, created by Amgen , offers free support resources, including access to the HEAT Kit. The HEAT Kit is created and distributed by the Eosinophilic & Rare Disease Cooperative.

Sign up today at www.ancaresourcehub.com.

Take a moment and check us out!Eosinophilic & Rare Disease CooperativeEosinophilRareDisease.org
05/21/2026

Take a moment and check us out!
Eosinophilic & Rare Disease Cooperative
EosinophilRareDisease.org

A hospital visit is stressful enough. Navigating it with a rare disease shouldn't have to be harder.ERDC offers free HEA...
05/19/2026

A hospital visit is stressful enough. Navigating it with a rare disease shouldn't have to be harder.
ERDC offers free HEAT Kits — practical, condition-specific resources designed to help people with rare disease advocate for themselves in the ER, at appointments, and anywhere the medical system feels overwhelming.
Kits are currently available for:
Order yours free at HEATKit.org
We're grateful to the partners who make this possible:

Some conditions don’t announce themselves loudly. https://bit.ly/4nqsKBlEosinophilic disorders can progress quietly, oft...
05/18/2026

Some conditions don’t announce themselves loudly. https://bit.ly/4nqsKBl

Eosinophilic disorders can progress quietly, often causing damage before a diagnosis is even made. That’s why awareness, early tracking, and education matter so deeply. 🤲

https://bit.ly/4nqsKBl

At ERDC, we're here because we are you. We hear the people who were told it was anxiety before it was EGPA. We see the o...
05/18/2026

At ERDC, we're here because we are you. We hear the people who were told it was anxiety before it was EGPA. We see the ones managing organ and nerve damage while fighting for a diagnosis.
Today — and every day — we're listening.

If you've been on prednisone for years, you already know the cost.Weight gain. Bone loss. Sleep disruption. The treatmen...
05/14/2026

If you've been on prednisone for years, you already know the cost.
Weight gain. Bone loss. Sleep disruption. The treatment that's supposed to help you — slowly making other things worse.
A new review in the oncology space is pushing hard for steroid-sparing approaches to treatment, and the reasoning will sound familiar to anyone in the MG community: prolonged corticosteroid use carries real risks, and better-targeted options exist.
The gMG community has been living this reality for a long time. And newer treatments — like Uplizna and Ultomiris — were developed precisely to improve outcomes and at the same time address this. More targeted. Less systemic damage. A chance to actually treat the disease without trading one set of problems for another.
The science is moving in this direction across medicine. For people with gMG, those options are here now.
🔗 https://pmc.ncbi.nlm.nih.gov/articles/PMC12815049/

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