Mission & Values
We're an organization built by patients, for patients. Everything we do comes back to one idea, no one navigating a rare disease should feel alone.
"Every moment and every penny goes to one thing: getting you the care you deserve."
We don’t just understand the journey. We’re on it.
As people with rare diseases – we need absolutely every resource we can get! It’s tough out there!
At ERDC we pride ourselves in NOT duplicating what other organizations are already doing. We take the time to see what other establishments are providing and step in to fill the gaps. We are so incredibly grateful for large entities who have so much to offer; every single person who is educated and supported on this incredibly difficult journey is a bonus!
Because we’re patients and care partners we know how vital it is to embrace all education and supportive resource that is out there. We will do our best to share resources with you – in addition to the tools and resources we offer.
We’re providing HEAT Kits at no cost, a Rare Candor Podcast that talks about the brutal and wonderful, things that exist out there, livestream education about the medications that work directly on our diseases and providing education on Policy Matters that affect us directly.
Whatever we have is yours. We will work with whomever is willing to join in providing support for the Rare Disease Community. We have testified before several congressional committees regarding medication access, tabled at Myasthenia Gravis conferences who graciously allowed our materials, attended and tabled at the NORD (National Organization for Rare Disease) conference, testified before State Legislatures regarding the nefarious role of PBMs (Pharmacy Benefit Managers – look for more information in an upcoming newsletter) and several other activities.
If you see needs that aren’t being filled, please contact us and we’ll do our best to continue providing services that aren’t duplicated anywhere else. Thank you for being on this journey with us!
Navigating health care is difficult...
...even when we are at our best. When we are ill, a member of an underserved or marginalized group, or have a rare disease, the challenges are exponential.
Improving access. One patient at a time.
ERDC exists to improve access to quality care and treatments for people with rare diseases — through education, advocacy, and practical tools built by patients, for patients.
Our flagship resource, the HEAT Kit™ (Hospital Emergency Advocacy & Treatment Kit), is available at no cost to anyone impacted by one of the rare diseases we serve. Our tools help patients and their loved ones build confidence and agency as they navigate the healthcare system.
We don't duplicate what already exists — we find the gaps and fill them.
What guides every decision we make.
- We tell the truth about what it's like to live with a complex chronic disease.
- We tell the truth about what it's like to love someone with a complex chronic disease.
- We listen. Deeply.
- We freely share what we have with other organizations and policy makers.
- We keep things practical and simple. Always.
Where we came from.
"If you're reading this — you know how it is."
ERDC was born from personal experience. Co-founder Sarah was diagnosed with EGPA — a rare form of vasculitis that took over a year to correctly identify. Her care partner Pam had already built a nonprofit for Parkinson's patients, and recognized the same systemic gaps playing out again.
Together, they built ERDC to do what the system doesn't: tell the truth, listen without judgment, and show up practically for every person navigating a rare disease diagnosis.
Get Involved
Every resource we build is free.
Every tool is yours.
From HEAT Kits to the Decision Tree to policy advocacy — everything ERDC does exists to get you the care you deserve.
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