ERDC - Eosinophilic & Rare Disease Cooperative

04/03/2026

So appreciative of the partnership with IgG4-RD News!
Take a moment and check out this resource for accessing new meds!

New treatments can be hard to access. https://www.eosinophilraredisease.org/step-by-step-roadmap-to-accessing-new-medications-treatments/

📍This step-by-step roadmap helps people living with IgG4-RD navigate insurance, assistance programs, and more to get the care they need.

Explore more here: https://www.eosinophilraredisease.org/step-by-step-roadmap-to-accessing-new-medications-treatments/

04/03/2026

New treatments can be hard to access. https://www.eosinophilraredisease.org/step-by-step-roadmap-to-accessing-new-medications-treatments/

📍This step-by-step roadmap helps people living with IgG4-RD navigate insurance, assistance programs, and more to get the care they need.

Explore more here: https://www.eosinophilraredisease.org/step-by-step-roadmap-to-accessing-new-medications-treatments/

03/26/2026

Do you use the phrase " "? I'm asking you — respectfully, directly — to consider dropping it.

Here is why:
https://www.eosinophilraredisease.org/please-stop-using.../

Lived experience is just... experience. All experience is lived.
What's the alternative — dead experience?

When my friend had a baby, I asked her what childbirth was like. Not "what was your lived experience of giving birth?" That would sound absurd. So why do we talk to patients differently?
I've been asked about my lived experience in rooms where no one knew how to say my disease's name.

I have — a affecting 2 in every million people. I will tell you anything and everything about what it's like to live with it. But call it what it is: my life. My everyday experience. Not my "lived experience."

Here's the problem with the phrase:
→ It's jargon. It creates distance instead of connection.
→ It turns people into case studies — data points in a grant application.
→ It separates the questioner from the person they're asking.
→ It can feel performative, a signal of sensitivity without the substance behind it.

The intention is usually good. I know that. People who use the phrase genuinely want to honor patients. But language matters, and sometimes the words we choose work against us.
So instead of asking about someone's "lived experience," try:
• What has this been like for you?
• What's your story?
• What have you been through?
Those questions open a conversation. They see the person, not the patient.

**Please don't just like this and scroll on. I genuinely want to hear where you land. Does the phrase resonate with you? Does it bother you? Does it serve a purpose I'm missing?**

Let's talk about it.

10/28/2025

Medicare enrollment can be overwhelming—especially when living with a rare disease. https://bit.ly/474NvMs

Join the Eosinophilic & Rare Disease Cooperative (ERDC) for a free virtual webinar to learn how to navigate plan selection and ensure your medications are covered.

🗓️ Virtual Webinar: Rare Disease Medicare Enrollment
💬 Hear from experts and a pharmacist about choosing the right plan for your needs.
🔗 Register now via our events page (Luma link in bio)

10/28/2025

Medicare enrollment can be overwhelming—especially when living with a rare disease. https://bit.ly/474NvMs

Join the Eosinophilic & Rare Disease Cooperative (ERDC) for a free virtual webinar to learn how to navigate plan selection and ensure your medications are covered.

🗓️ Virtual Webinar: Rare Disease Medicare Enrollment
💬 Hear from experts and a pharmacist about choosing the right plan for your needs.
🔗 Register now via our events page (Luma link in bio)

09/20/2025

09/19/2025

Medicare Part B Infusion Proposed Changes & Medicare Prior Authorization Pilots

Medicare (CMS) is proposing changes that could significantly affect access to infusion medications as well as new pilot programs requiring prior authorization, which may delay or restrict treatment.

This livestream will help us all learn about the proposed changes and what we can do about them.
To register go to: https://luma.com/6h88rg8y

07/07/2025

If you were not able to join Dr. Jessica Most, pulmonologist and medical director of eosinophilic disorders at AstraZeneca, this interactive educational livestream is worth your time!

06/04/2025

Yesterday, I had the honor of representing ERDC - Eosinophilic & Rare Disease Cooperative and the broader rare disease community at a standing-room-only Congressional briefing on tariffs and their impact on the healthcare supply chain. Over 70 attendees—mostly legislative staff—joined to better understand what’s at stake.

💡 Did you know it takes 24 individual medical items to safely deliver a single infusion? Now, Congressional staff do too—thanks to this important conversation.

Millions of Americans with chronic and rare conditions rely on timely access to infusions, devices, and treatments. Tariffs on pharmaceuticals and medical supplies threaten to delay care, disrupt treatment, and harm lives. This is preventable—and action is needed.

Grateful to Center Forward for the invitation and to my fellow panelists from Biotech Innovation Organization (Hilary Stiss), National Association of Manufacturers - NAM, and Healthcare Supply Chain Association for an engaging and urgent dialogue.

This issue affects all of us—patients, providers, manufacturers, and lawmakers alike. Let’s keep the pressure on to ensure healthcare remains accessible, uninterrupted, and affordable.

05/31/2025

We’re feeling the good kind of tired after a powerful — energized by community, connection, and impact.

But let’s be clear:
Being tired is not the same as disease-related fatigue.
Vasculitis-related fatigue is relentless and debilitating — it’s a symptom, not just exhaustion.

Let’s keep raising awareness. Keep educating. Keep fighting.

05/30/2025

Ever leave the doctor’s office thinking, “I wish I’d said more”?
You’re not alone—and now’s your chance to say it. 💥

We’re collecting anonymous insights for “What Your Patients Don’t Tell You”—to be shared directly with rheumatologists at their national conference. Let them hear the truth.
📢 Take the survey →https://s.surveyplanet.com/e8w28u68