2026-08-17T10:50:26-07:00 2025-12-31 201985798 SOLID GROUND PLLC 2240 W SILVERBELL TREE DR TUCSON AZ 85745 990 2025-01-01 862807827 Eosinophilic & Rare Disease Cooperative EOSI 5206904233 3876 Old Elm Dr SE Kentwood MI 49512 Pamela Squires CEO 2026-08-17 true Eileen M Ratajczak P00469451 5209796732 X 2025 2025-03-06 01:10:19Z X Pamela Squires 3876 Old Elm Dr SE Kentwood MI 495129523 351488 false X www.eosinophilraredisease.org X 2021 AZ Provide education and tools for people with rare disease. 8 8 1 1 0 8604 348686 117900 0 2802 0 126504 351488 0 0 40255 69280 2370 0 0 27785 51792 70410 121072 56094 230416 60027 291945 151 60027 291794 X Provide education and tools for people with rare disease. false false 47106 HEAT Kits: Disease-specific Hospital Emergency Advocacy and Treatment Kits (HEAT Kits) that put plain-language, expert-reviewed information directly into the hands of patients and healthcare. HEAT Kits enable patients to engage in the healthcare community with confidence, even when not feeling well. Distributed for five rare diseases across the country and sent via PDF internationally. 24191 Livestream educational sessions bring people face to face with pharmacists, experts, and treatment developers to answer real questions about access, treatment decisions, and insurance. We avoid jargon, and encourage engagement with the presenter. Each session becomes enduring education on ERDC's YouTube platform, so the answers keep helping long after the livestream ends.Rare Candor Podcast: Unscripted conversations with real people, clinicians, and advocates about what it actually means to live with or care for someone with a rare disease. Available on Spotify and Apple, it's storytelling as advocacy, proof that the most powerful education comes from people telling the truth about their own lives. 22260 ANCA Vasculitis Decision Tree: A step-by-step decision making and planning platform that walks people with GPA, MPA, or EPGA through a personalized path from diagnosis to emergency decision-making, backed by a formal white paper written for journal submission. It gives clinicians and patients alike a clear, print-ready guide built from the patterns our community has lived through again and again. 10962 Public Policy: ERDC shows up where treatment access is actually decided with legislators and regulators, not just in the doctor's office. We've submitted formal comment letters, briefed congressional staff, and organized alongside national partners to oppose the withdrawal of essential medications and push back on pricing frameworks that leave 95% of rare diseases unprotected. 10962 104519 true true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true 4 0 true 1 true false false false false false false false 0 false false false false false false false X 8 8 false false false false false false false true true false false true true true true false true true false false X Sarah Jones 5206904233 3876 Old Elm Dr SE Kentwood MI 495129523 Pamela Squires CEO 40.00 0.00 X 63152 0 1414 Donna McArthur Chair 2.00 0.00 X X 0 0 0 Carol Jones Secretary 2.00 0.00 X X 0 0 0 Roni Byrne Director 2.00 0.00 X 0 0 0 Karin Hoelzer Director 2.00 0.00 X 0 0 0 Laure Larkin Director 2.00 0.00 X 0 0 0 Lynette Matson Director 2.00 0.00 X 0 0 0 Maria Cristina Ospina Director 2.00 0.00 X 0 0 0 John Stadler Director 2.00 0.00 X 0 0 0 63152 1414 0 false false false 0 119 348567 348686 0 2802 2802 0 0 0 0 0 0 0 0 351488 2802 0 0 0 0 64566 57473 7093 0 0 0 0 4714 4243 471 0 0 5500 5500 0 0 0 2612 2018 594 2109 1729 380 3287 2408 879 13595 12834 761 0 0 9128 9128 0 0 0 0 0 638 171 467 Printing and Publications 6791 6791 Postage and Shipping 5724 5724 Donations made 2000 2000 Licenses and fees 408 408 0 121072 104519 16553 0 60027 33646 258299 0 0 0 0 0 0 0 0 0 0 0 0 0 60027 291945 151 0 151 X 60027 291794 60027 291794 60027 291945 230416 1351 X false false false X 500 7218 126504 348685 482907 0 0 500 7218 126504 348685 482907 0 482907 2802 2802 0 0 485709 X 0.00000 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Form 990, Part VI, Section B, Line 11b The board receives a copy of the 990 prior to its filing with the IRS. Form 990, Part VI, Section B, Line 15a An annual survey of similar organizations of a similar size is completed to inform the board of current market rates for the CEO position. The full board reviews and votes on the CEO compensation. Form 990, Part VI, Section C, Line 19 ERDC's governing documents, conflict of interest policy, and financial statements are available upon request. HEAT Kits HEAT Kits are Hospital Emergency Advocacy and Treatment KitsA person with GPA, MPA, EGPA, MG, lgG4-RD, or HES generally does not get to what they need when a flare sends them to the emergency room. Too often, the clinicians have never treated their condition. It would be unreasonable to think they had. The conditions are rare and treatments are scarce.Additionally, these diseases are often existing way below the skin and the patient shows for care "looking fine and with standard labs appearing normal and fine. When they are anything but fine. The sick person in the bed or the loved one that comes with them becomes the only expert in the room.The HEAT Kit exists to change that moment. It puts plain-language, disease-specific information directly into the hands of our community and the emergency teams treating them, so a crisis does not turn into a battle for basic recognition. We build this resource in print form so as to be accessible to providers and emergency responders without navigating a phone. The professional quality provides the patient confidence and translates to credibility when being given to providers to reference. HEAT Kits are disease specific, have been reviewed by experts in the field and are designed to be useful in the ER, hospital and any medical setting. Public Policy Rare disease does not stay out of politics, because access to treatment is decided in policy long before it is decided in a doctor's office. ERDC shows up where those decisions get made. We speak directly to legislators and regulators on the issues that determine whether our community can afford and access the treatments keeping them alive, from opposing the withdrawal of essential medications to pushing back on drug pricing frameworks that leave 95 percent of rare diseases unprotected because they lack an approved treatment. We have submitted formal comment letters, briefed congressional staff, and organized alongside national partners because the people most affected by these policies are rarely in the room when they are written. We put them there. This work is not partisan. It is about what our community needs, said plainly and said directly. Rare Candor Podcast Rare disease conversations are too often sanitized, softened, or skipped entirely. Rare Candor exists because our community deserves the opposite: honest conversations about what it actually means to live with GPA, MPA, EGPA, MG, lgG4-RD, or HES, and to care for someone who does. Each episode brings real people, real clinicians, and real advocates into a conversation without a script. This is raw and real storytelling as advocacy, proof that the most powerful education comes from people telling the truth about their own lives. This podcast is available on Spotify and Apple platforms. The ANCA Vasculitis Decision Tree When someone with GPA, MPA, or EGPA is in front of a clinician who has never managed their condition, every minute spent explaining the basics is a minute not spent on treatment. The ANCA Vasculitis Decision Tree gives providers and people with the disease a clear, visual path through diagnosis and emergency decision-making, built from the patterns our community has lived through again and again. The platform is a step by step tool that walks people through their personalized path and provides them with print outs throughout the Decision Tree journey. It is grounded in a formal white paper written for journal submission, so the tool carries clinical weight, not just community insight. This is what it looks like when people with rare disease stop waiting for research to catch up and start writing it themselves. The Biologics Livestream Seris ERDC Livestreams brings people face to face with the information they need to make that leap with confidence, not guesswork when accessing their treatment, understanding the nuances of treatment decisions and navigating insurance. We partner directly with pharmacists, experts and the companies developing these treatments to answer real questions from our community in real time, no jargon, no runaround. This is education built on trust, delivered by an organization that answers to the people watching, not to a marketing calendar, and are enduring material on our YouTube platform. Who We Serve Somewhere tonight, a person will sit in an emergency room and try to explain a disease most doctors have never heard of, meet with a new doctor that has never treated their rare disease, or try to access their medication only to be denied. That moment is why ERDC exists.We serve people living with Granulomatosis with Polyangiitis (GPA), Microscopic Polyangiitis (MPA), Eosinophilic Granulomatosis with Polyangiitis (EGPA), Myasthenia Gravis (MG), lgG4-Related Disease (lgG4-RD), and Hypereosinophilic Syndrome (HES). These are conditions most people have never heard of, diagnosed too late, treated with too little urgency, and researched with too little funding.ERDC is a patient- and care partner-run organization, which means every program we build comes from people who have lived through the diagnosis, the treatment, and the fight for care that meets them where they are.We are not chasing a cure. We are working for access to the right treatment at the right time, every time. The patient communities we engage with reaches more than 120,000 people, and it keeps growing because the need does not go away when the awareness campaign ends.