ERDC - Eosinophilic & Rare Disease Cooperative

10/23/2026

Part A. Part B. Part C. Part D. A supplement. Prior authorization. Networks.

If your eyes just glazed over, you’re in good company.

Most Medicare advice is written for someone who sees a doctor twice a year. That is not us. We have specialists in other states, infusions that cost thousands, and no room for a plan that says no.

Medicare open enrollment, in plain language: a livestream for people living with rare disease. Friday, October 30 at 1 PM ET. Bring your questions.

Register: https://luma.com/ynbsi7pt

-rd

10/20/2026

Thanks for sharing!
Register today for the for open enrollment livestream!

Medicare open enrollment can bring big questions.❓

Get help making sense of your options.

🔍 Join ERDC’s “Medicare Open Enrollment” webinar to learn how to navigate enrollment and explore insurance coverage that fits your needs. Open to everyone—bring a friend or care partner!

📅 October 30, 2026 | 10 a.m. PDT (1 p.m. EDT)

Save your spot and get ready to make informed choices 👉 https://luma.com/ynbsi7pt

10/20/2026

Medicare open enrollment can bring big questions.❓

Get help making sense of your options.

🔍 Join ERDC’s “Medicare Open Enrollment” webinar to learn how to navigate enrollment and explore insurance coverage that fits your needs. Open to everyone—bring a friend or care partner!

📅 October 30, 2026 | 10 a.m. PDT (1 p.m. EDT)

Save your spot and get ready to make informed choices 👉 https://luma.com/ynbsi7pt

10/19/2026

You pick a Medicare plan in the fall. It feels like a one-year decision.

For a lot of us, it isn’t.

In most states, choosing Medicare Advantage can mean you are never again able to buy the supplement that makes Traditional Medicare affordable. Nobody puts that in the brochure.

Join our livestream Friday, October 30 at 1 PM ET. We’ll walk through it together: what A, B, C, D and the supplement do, what you gain and give up on each path, and the questions to ask before December 7.

Register: https://luma.com/ynbsi7pt

We hear you. We see you. Because we are you.
-rd

10/15/2026

"I don't know what tomorrow holds, and I'm making peace with that. The hardest part of chronic illness for me has never been the symptoms. It's the not-knowing. I can't promise anyone, including myself, what next week looks like. For a long time that uncertainty felt like the ground constantly moving under me. What's shifted is realizing uncertainty isn't unique to being sick, it's just louder here. Nobody actually knows what tomorrow holds. I'm trying to hold my plans a little more loosely, and hold today a little more closely. That's the whole practice, some days. Just today."
Living with rare disease & chronic illness, one honest day at a time.
-RD

10/12/2026

"64% said medical debt affected their mental health."
Medical debt doesn't stay in your bank account. It moves into your sleep, your mood, your sense of who you are.
For the rare disease community, that toll is rarely part of the conversation. It's time it was. Read the full ERDC - Eosinophilic & Rare Disease Cooperative Disease Medical Debt report at https://www.eosinophilraredisease.org/medical-debt-in-rare-disease/

10/08/2026

"No is a complete sentence. I said no today to something I actually wanted to do, because the after would have cost me three days I didn't have to spend. That used to feel like failure. Now I recognize it as math: this body has a budget, and every yes spends from it, good things included. Bernhard writes about equanimity — about neither grasping at what we want nor pushing away what we have. I'm not fully there. But I said no today without the usual guilt spiral, and that's progress I'm willing to celebrate."
Living with rare disease & chronic illness, one honest day at a time.
-RD

10/05/2026

She paid the full bill. No one told her there was help.
51% of people with rare disease medical debt say no one ever told them financial assistance existed — not the hospital, not their care team, no one.
Help that isn't communicated isn't help at all.

Tell your representative & Senator to pass meaningful legislation to address medical debt such as the .

Read the full ERDC - Eosinophilic & Rare Disease Cooperative Disease Medical Debt report at https://www.eosinophilraredisease.org/medical-debt-in-rare-disease/

10/01/2026

"The good five minutes still count. A flare doesn't erase the whole day, even though it feels like it should. There have been rough days when I would have maybe five good minutes on the porch, sun actually warm. Ten years ago I'd have discounted that — five minutes wasn't the day I'd planned, so it didn't count. I don't do that math anymore. Five good minutes is five good minutes. I'm learning to actually notice them instead of waiting for a whole good day to show up before I let myself feel anything."
Living with rare disease & chronic illness, one honest day at a time.
-RD

09/28/2026

Medical debt doesn't just take your money. It takes your life.
For people living with rare disease, debt means skipped visits with friends, missed events, a calendar that quietly empties out.
It's not just a bank statement. It's isolation.

Tell your Representative & Senator to pass meaningful legislation to address medical debt that reaches the patient such as .

Read the full ERDC - Eosinophilic & Rare Disease Cooperative Disease Medical Debt Report at https://www.eosinophilraredisease.org/medical-debt-in-rare-disease/