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# ERDC

Emergency & Medical Resources Support for Rare Diseases

## Sitemaps

- [XML Sitemap](https://www.eosinophilraredisease.org/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [My Personalized QoL Tool](https://www.eosinophilraredisease.org/my-personalized-qol-tool/) - Click on the video below to watch the Quality of Life Tracking: Creating Your Personalized ADL Scale livestream: Here is the QoL Tool we looked at during the livestream. Click to download a fillable version: QoL-Tool-Revised-Fillable (1)Download
- [ERDC's Letter to the FDA Re: Proposal to Withdraw Approval for Tavneos](https://www.eosinophilraredisease.org/erdcs-letter-to-the-fda-re-proposal-to-withdraw-approval-for-tavneos/) - May 19, 2026 Dockets Management Staff (HFA-305) Food and Drug Administration 5630 Fishers Lane, Rm. 1061 Rockville, MD 20852 RE: Docket No. FDA-2026-N-1321 — Comment Opposing Withdrawal of NDA 214487 for TAVNEOS (Avacopan); Request That the Drug Remain Available with Updated Labeling To the Dockets Management Staff and the Director of the Center for Drug
- [When the Headlines Miss the Point: What the Tavneos Story Leaves Out](https://www.eosinophilraredisease.org/when-the-headlines-miss-the-point-what-the-tavneos-story-leaves-out/) - THE SHORT VERSION Japan reversed course on May 21, 2026. Doctors can once again prescribe Tavneos to new patients. The drug was never pulled from the market. Kissei asked for a brief pause in new prescriptions while regulators assessed the situation. Japan’s Ministry of Health responded by updating the drug’s label with stronger liver monitoring
- [Personalized Quality Of Life Tool To Download](https://www.eosinophilraredisease.org/personalized-quality-of-life-tool-to-download/) - CLICK TO DOWNLOAD THE TOOL QoL-and-Living-Will-template-FillableDownload Please note, if you have MG and are looking to utilize this tool to complement your ADL scale, we recommend using the following rating - 10=0 on the ADL Scale7=2 on the ADL Scale5=3 on the ADL Scale 3=4 on the ADL scale. See example below.
- [FDA Has Recommended Removing Approval for Tavneos (Avacopan)](https://www.eosinophilraredisease.org/fda-has-recommended-removal-approval-for-tavneos-avacopan/) - If you are currently taking Tavneos (avacopan) for GPA or MPA, you have probably heard that the FDA has proposed withdrawing the drug's approval. We want to tell you what is actually happening — clearly, honestly, and without minimizing what is at stake. First: do not stop taking Tavneos without talking to your doctor. An
- [Sleep-related Quality of Life in Patients with Myasthenia Gravis](https://www.eosinophilraredisease.org/sleep-related-quality-of-life-in-patients-with-myasthenia-gravis/) - Below is a summary of a research article about sleep. A link to the full article is at the bottom. Rest well!Sleep and Quality of Life: What Patients and Care Partners Should Know Sleep is more than just rest—it is a critical part of how your body and mind function every day. New research in
- [Quality of life and social support as key determinants of anxiety and depression in Myasthenia Gravis: evidence from a Chinese cohort](https://www.eosinophilraredisease.org/quality-of-life-and-social-support-as-key-determinants-of-anxiety-and-depression-in-myasthenia-gravis-evidence-from-a-chinese-cohort/) - In addition to reading this article - we suggest you take a look at the Personalized Quality of Life Tool we created to track how the disease was impacting life. It is worth tracking, and this tool is not cooker-cutter. It is YOURS!Here is a summary of what the researchers said....Living with myasthenia gravis (MG)—a
- [Myasthenia Gravis in 2025: five new things and four hopes for the future](https://www.eosinophilraredisease.org/myasthenia-gravis-in-2025-five-new-things-and-four-hopes-for-the-future/) - Below is a summary of the research article. A WHOLE LOT HAS HAPPENED SINCE 2016! This article explores a decade of research for MG. And wow, it has been a busy decade! Why This Article Matters A team of neurologists from the University of Oxford reviewed everything that has changed in the treatment of myasthenia
- [Please Stop Using "Lived Experience"](https://www.eosinophilraredisease.org/please-stop-using-lived-experience/) - Why the Phrase "Lived Experience" Doesn't Sit Well With Me In the world of rare disease and chronic illness advocacy, certain phrases catch fire fast. They show up in research papers, nonprofit materials, conference presentations, and patient engagement efforts. Everyone starts using them. And somewhere along the way, nobody stops to ask whether they're actually
- [Eosinophilic & Rare Disease Cooperative (ERDC) Engages National Effort to Strengthen Research, Protect Incentives, and Improve Access to Rare Disease Treatments](https://www.eosinophilraredisease.org/eosinophilic-rare-disease-cooperative-erdc-leads-national-effort-to-strengthen-research-protect-incentives-and-improve-access-to-rare-disease-treatments/) - FOR IMMEDIATE RELEASE Grand Rapids, MI — February 26, 2026 — Eosinophilic & Rare Disease Cooperative (ERDC) is playing a pivotal role in advancing policies that improve medication research, development, and real-world access for people living with rare diseases. Serving individuals and families affected by more than 40 rare diseases — with a primary focus
- [From Rare to Rapid: How Pediatric Priority Review Vouchers Accelerate Treatments for All](https://www.eosinophilraredisease.org/from-rare-to-rapid-how-pediatric-priority-review-vouchers-accelerate-treatments-for-all/) - What Are Pediatric Priority Review Vouchers — and Why Do They Matter for the Rare Disease Community? If you’re part of the rare disease community, you may have heard the term Pediatric Priority Review Voucher (PRV). Although the name includes “pediatric,” these vouchers can ultimately impact treatments for both children and adults. What Is a
- [Statement by ERDC on Tavneos](https://www.eosinophilraredisease.org/12294-2/) - We know many in our community are hearing news about Tavneos (avacopan) and questions about its safety, specifically regarding liver toxicity. We want to share what we as a patient organization believe and support: We support patients and their right to informed choice. Every person’s health situation is unique. Decisions about treatment should be made between patients and their
- [Thank You & Enter To Win A Gift Card!](https://www.eosinophilraredisease.org/thank-you-register-for-your-gift-card/) - Thank you for completing the Medical Debt survey. We resonate with your experience and are grateful for your time. PLEASE NOTE: We’ve received more than 100 survey responses—thank you! The $50 gift cards for the first 30 respondents have already been distributed. To show our appreciation, we’re also adding a drawing for ten $10 gift
- [Kidneys & ANCA Vasculitis: Accessing Care & Tracking Impact](https://www.eosinophilraredisease.org/kidney/) - Tracking kidney health can feel complicated and overwhelming. Many of us are juggling information, treatments, and monitoring across multiple providers who may not always coordinate care—leaving patients to act as the main connector. This livestream, along with the HEAT Kit (now including a dedicated Kidney page), is designed to support you and make everyday kidney
- [Current and future advances in practice: IgG4-related disease](https://www.eosinophilraredisease.org/current-and-future-advances-in-practice-igg4-related-disease/) - Zachary S Wallace 1,2,✉, Guy Katz 3,4, Yasmin G Hernandez-Barco 5,6, Matthew C Baker 7 READ THE FULL ARTICLE Patient-Focused Summary of Key Points in the Article What is IgG4‑related disease (IgG4‑RD)?IgG4‑RD is a condition where the immune system causes inflammation and scarring in one or more organs. It can affect many parts of the body (pancreas, salivary glands, kidneys, lungs, arteries,
- [Using Product Information Pamphlets to Assist Prior Authorization for New Meds](https://www.eosinophilraredisease.org/using-product-information-pamphlets-to-assist-prior-authorization-for-new-meds/) - For people living with rare diseases, accessing the right medication can sometimes feel like navigating a maze. One common challenge arises when a medication is approved for a new indication. A new indication means that the FDA has officially approved a medication to treat a condition it wasn’t originally prescribed for. This often happens after
- [Medicare for Rare Disease Slides](https://www.eosinophilraredisease.org/medicare-for-rare-disease-slides/) - The slides in this post go hand-in-hand with our Medicare video series, created to help you find the plan that fits your unique needs. For clear, step-by-step guidance through the complexities of Medicare — from Parts A through D and beyond — visit our Medicare for Rare Disease page. You’ll find practical tips, real patient
- [Step-By-Step Roadmap to Accessing (New) Medications & Treatments](https://www.eosinophilraredisease.org/step-by-step-roadmap-to-accessing-new-medications-treatments/) - Getting healthcare covered—especially for new medications or procedures—can feel overwhelming. But remember it’s a process, and a “no” from your insurance company is not always final. Also remember if you get a letter in the mail that says it is denied and may not be on formulary, read the whole letter. It is often about
- [Summary: The Emerging Mysteries of IgG4-RD and link to full article](https://www.eosinophilraredisease.org/summary-the-emerging-mysteries-of-igg4-rd-and-link-to-full-article/) - IgG4-related disease (IgG4-RD) is a rare, systemic condition characterized by inflammation and fibrosis (scarring) in various organs. It can affect nearly any organ, including the pancreas, salivary glands, kidneys, and lymph nodes. Despite increasing recognition, its exact cause remains unknown, though both genetic and environmental factors may contribute. A hallmark feature of IgG4-RD is the
- [When Your Mind Feels Different: Brain Fog, Cognitive Changes, and Personality Shifts](https://www.eosinophilraredisease.org/when-your-mind-feels-different-brain-fog-cognitive-changes-and-personality-shifts/) - Brain fog. Forgetfulness. Personality changes. These are among the most unsettling symptoms people with rare diseases can face — and yet, they’re often brushed aside or misunderstood. I’ve watched my wife, Sarah, experience all of these, and I’m here to tell you: they’re real, they matter, and they deserve attention. Cognitive and personality changes can
- [Prior Authorizations, Specialty Pharmacy, Co-Pay Assistance & More](https://www.eosinophilraredisease.org/prior-authorizations-specialty-pharmacy-co-pay-assistance-more/) - View the interactive livestream education:
- [](https://www.eosinophilraredisease.org/11762-2/) - Track What Really Matters — Your Quality of Life Sometimes, medical appointments focus on symptoms and lab results that don’t always reflect how we actually feel day to day. This tool flips that perspective. By creating your own simple, personal scale, you can track how your disease impacts your life over time — on your
- [“IgG4-related disease: lessons from the first 20 years” by Dr. John H. Stone](https://www.eosinophilraredisease.org/igg4-related-disease-lessons-from-the-first-20-years-by-dr-john-h-stone/) - Here is a summary of the full article: Understanding IgG4-Related Disease Lessons from the First 20 Years IgG4-related disease (IgG4-RD) is a long-term immune condition that causes inflammation and scarring (fibrosis) in one or more organs. It was first recognized about 20 years ago, and since then, researchers and patients have helped uncover how it
- [IgG4-related disease: What a Hematologist Needs to Know](https://www.eosinophilraredisease.org/igg4-related-disease-what-a-hematologist-needs-to-know/) - Here is a summary of the FULL ARTICLE: This article is a review aimed at hematologists (blood disease specialists) to help them recognize and understand how IgG4-related disease (IgG4-RD) can appear in blood-related settings. Although IgG4-RD is often thought of as a rheumatology/immunology disease, many of its features overlap with hematologic findings, and it can
- [](https://www.eosinophilraredisease.org/11745-2/)
- [](https://www.eosinophilraredisease.org/11749-2/)
- [](https://www.eosinophilraredisease.org/11752-2/)
- [](https://www.eosinophilraredisease.org/11755-2/)
- [](https://www.eosinophilraredisease.org/11765-2/)
- [](https://www.eosinophilraredisease.org/11759-2/)
- [Accessing Medications Should Not Be So Hard](https://www.eosinophilraredisease.org/accessing-medications-should-not-be-so-hard/) - This public policy live stream will provide you with an overview of the Safe Step Act as well as the upcoming changes to medicare part B that will impact access to infusions. Additionally, we cover how to best contact your legislators and what matters when you talk with them! Join us! Get Active!
- [Frailty in Vasculitis](https://www.eosinophilraredisease.org/frailty-in-vasculitis/) - A recent publication Journal of Rheumatology (June 2025) showed the majority of patients with each form of vasculitis were classified as frail or prefrail. The research used the FRAIL scale and was completed by the VPPRN. If you have vasculitis and are not a member, please join! Your input is invaluable and helps us have
- [Brain Fog with Chronic Disease is Not A Myth](https://www.eosinophilraredisease.org/brain-fog-with-chronic-disease-is-not-a-myth/) - We hope this article, written by the person who works with Community Engagement and lives with EGPA, will help you feel less alone with brain fog! This article was published on ANCA Vasculitis News in the column, Truth Be Told. Check it out and subscribe to ANCA Vasculitis News!BRAIN FOG WITH CHRONIC DISEASE IS NOT
- [Do You Have The Best Treatment Plan In Place Livestream](https://www.eosinophilraredisease.org/do-you-have-the-best-treatment-plan-in-place-livestream/) - In this candid and insightful conversation, a patient and a rheumatologist dive into some of the most important—but often overlooked—topics in chronic illness care.Together, they explore how to talk with your doctor about what really matters to you, including quality of life concerns, pain, fatigue, mobility, energy, and the emotional impact of chronic disease. They
- [Fasenra for EGPA](https://www.eosinophilraredisease.org/fasenra-for-egpa/) - Dr. Jessica Most, Pulmonologist and Medical Director for Eosinophilic Disorders at AstaZeneca talks about the unique mechanism of action for Fasenra (benralizumab) in the treatment of EGPA. She also covers dosing, who is eligible and how to talk with your doctors about new treatments!
- [Personalized Quality Of Life Tool](https://www.eosinophilraredisease.org/personalized-quality-of-life-tool/) - Explore the Quality of Life Tool designed for people with rare and chronic conditions. The tool can be found below as well as a recording of a livestream that walks you through how to complete and use the tool to improve your care coordination with your provider.
- [Quality Of Life](https://www.eosinophilraredisease.org/quality-of-life/) - We’re finding it necessary to come up with our own scale of what quality of life means to us. It’s also a way of dealing, concretely, with the fact that our quality of life will never go back to what it was in pre-diagnosis days. There’s a lot of grief that comes up with that.
- [ORPHAN CURES ACT - Congress Must Act!](https://www.eosinophilraredisease.org/orphan-cures-act-congress-must-act/) - Save Rare Treatments Task Force_Statement in Support for Senate Introduction of ORPHAN Cures Act_May 22 2025Download
- [Tariffs Will Hurt Access To Our Treatments](https://www.eosinophilraredisease.org/tariffs-will-hurt-access-to-our-treatments/) - ERDC Statement on Healthcare TariffsDownload
- [ERDC 2025 Public Policy Initiatives](https://www.eosinophilraredisease.org/erdc-2025-public-policy-initiatives/) - ERDC focuses it’s top policy priorities on systemic issues that impact access to care and treatments for people with rare disease. Specifically we work to: Break down policy issues into bite-size education/action alerts to engage the rare disease community in advocacy. Address systemic barriers that inevitable impact access for the rare disease community. LEARN MORE:
- [Intimacy In The Context of Chronic Illness](https://www.eosinophilraredisease.org/intimacy-in-the-context-of-chronic-illness/) - This topic is literally the last thing on anyone’s mind who has a chronic illness and/or rare disease. ERDC’s most recent survey results prove this. Out of 8 items that include feeling safe from disease crisis, autonomy, physical ability to do ADLS… it’s not surprising that concern with intimacy is the lowest score. Recently, we
- [Maximizing Healthcare Visits (ER, Hospital and Doctor Office)](https://www.eosinophilraredisease.org/maximizing-healthcare-visits-er-hospital-and-doctor-office/) - https://youtu.be/NkVT-YfcVG4
- [Shenanigans in Healthcare](https://www.eosinophilraredisease.org/shenanigans-in-healthcare/) - Here is my edgy view...The healthcare industry is what it is in the United States. How’s that for profundity?We’re not going to change the fact that everyone wants their share of the healthcare dollar to make a buck. However, my reaction to the CEO of United Health Insurance getting shot at point blank range really
- [Medication Moment: Tavneos (avacopan)](https://www.eosinophilraredisease.org/medication-moment-tavneos-avacopan/) - Watch the interactive livestream.
- [Polypharmacy: Why So Many Meds!?!?](https://www.eosinophilraredisease.org/polypharmacy-why-so-many-meds/) - Click below to download the information provided during the livestream: POLYPHARMACY- Why So Many Meds!?!?
- [Medicare $2000 Out Of Pocket Med Cap](https://www.eosinophilraredisease.org/medicare-2000-out-of-pocket-med-cap/) - Next year Medicare will have an out of pocket cap on insurance for the first time - ever! The $2,000 cap is for medication only. All medication. All pharmacies! There are several ways this will be implemented.Take a look at this great step by step guide created by Alliance For Patient Access. It will help
- [Letter to Senate Finance Committee -Orphan Cures Act](https://www.eosinophilraredisease.org/letter-to-senate-finance-committee-orphan-cures-act/) - Letter to Senate Finance Committee -Orphan Cures Act ERDC submits a letter for the record to the US Senate Finance Committee about the importance of correcting the Orphan Cures Act to ensure rare disease research continues. September 16, 2024 Statement for the Record for Senate Finance Committee, September 17, 2024, Full Committee Hearing “Lower Health Care Costs for Americans: Understanding the Benefits of
- [Bad Actors Impacting Medication Access - Pharmacy Benefit Managers](https://www.eosinophilraredisease.org/1084-2/) - There are so many bad actors in the health care ecosystem that it’s hard to keep track of them all! That’s why we’re here – to try and break down some of these complicated and bloated systems to ensure that you have the information you need – and when you have the energy and time
- [Orphan Cures Act](https://www.eosinophilraredisease.org/orphan-cures-or-at-least-treats/) - Just wanted to inform everyone who has a rare disease, or loves someone with a rare disease, that there is an opportunity to make a difference. When it comes to research for medications for our rare diseases we can have a voice. Background – the Problem: Back in the 1980’s Congress passed the Orphan Drug
- [Labs & Radiology Tests](https://www.eosinophilraredisease.org/labs-radiology-tests/) - We have added a new page to the HEAT Kit. This page, put together in consultation with a rheumatologist who is a vasculitis expert, surfaces some blood tests and considerations when being evaluated in a health care setting. The blood tests are the best practice tests that are routinely completed on vasculitis patients to monitor
- [Founding Story](https://www.eosinophilraredisease.org/founding-story/) - Healthcare. There's something in that word that brings up a visceral and usually unpleasant sensation in the pit of our stomachs. And. It's obviously essential for the survival of people with rare and chronic diseases. Years ago my wife started an organization to help people with Parkinson’s Disease and their care systems. She was
- [ERDC & You](https://www.eosinophilraredisease.org/erdc-you/) - There is a Save Rare Treatments task force that is working on saving the incentives for pharmaceutical companies who create the research and medications for our rare diseases. These incentives were accidentally overlooked in the recently passedInflation Reduction Act.Without getting too much in the weeds – we’re trying to get Congress to pass the Orphan
- [Receive Our Newsletter](https://www.eosinophilraredisease.org/sign-up-to-receive-our-newsletter/)
- [Spoon Theory](https://www.eosinophilraredisease.org/spoon-theory/)

## Pages

- [Home](https://www.eosinophilraredisease.org/) - It's tough out there! Who is ERDC? As people with rare diseases, we need absolutely every resource we can get! At ERDC, we pride ourselves in NOT duplicating what other organizations are already doing, and step in to fill the gaps. Because we’re patients and care partners we know energy is limited and understanding about our
- [Resources & Organizations](https://www.eosinophilraredisease.org/resources/) - Navigating a rare disease is challenging. We've got you covered.
- [Medications & Treatments](https://www.eosinophilraredisease.org/medications-treatments/) - Medications & Treatment Treatments By Disease In each of the sections you will find two listings: One listing will be the names of generic medications or medications that are used “off label”. “Off label” means that it is not FDA approved for this disease state, but may be prescribed for you to treat the disease.
- [Decision Tree For Rare Disease](https://www.eosinophilraredisease.org/medicare-for-rare-disease-resources-duplicate-11936/) - Decision TreeBest Practice Suggestions WHY USE THE DECISION TREE: Every day, patients with ANCA vasculitis face three major barriers to getting the care they need: Lack of Accessible Resources – Most available medical guidance is dense, overwhelming, and difficult to navigate. Patients need a quick-reference tool that simplifies decision-making. Delayed & Inadequate Treatment – Many
- [Events](https://www.eosinophilraredisease.org/events/) - Events Welcome! We’re thrilled you’re interested in joining our events. To get started, simply click the ‘Join Event’ buttons below. You’ll be taken to our registration page, where you can easily add the events to your calendar and set up reminders. We can’t wait to see you there! Rare Disease Medicare EnrollmentDecember 16. 20253pm ET, 12
- [Medicare For Rare Disease Resources](https://www.eosinophilraredisease.org/medicare-for-rare-disease-resources/) - Medicare For Rare Disease MEDICARE OPEN ENROLLMENT FOR RARE DISEASE Let’s be honest — Medicare is complicated (at best). And when you live with a rare disease, it can feel downright impossible to figure out what covers your medications, specialists, and unexpected health needs. We’ve been there.That’s why we created Medicare for Rare Disease —
- [News](https://www.eosinophilraredisease.org/news/) - News A Treasure Trove of What is On Our Minds ERDC News and Stories about living with a rare disease, care partner impact, physician engagement and more. Check back regularly to find articles from our newsletter, stories and information about ERDC’s service impact and resources the ERDC provides to improve access to quality care and
- [About Us](https://www.eosinophilraredisease.org/about/) - 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.
- [Get Your HEAT Kit™](https://www.eosinophilraredisease.org/heat-kit-2-3/) - Hospital Emergency Advocacy & Treatment (HEAT) Kit “I was confident, outspoken and strong for all of my life – until I found myself sick and in need of emergency care.” Hospital, emergency and doctor visits are hard enough when you are sick and in need. When compounded by the presence of a systemic illness- it
- [Medication Assistance Programs](https://www.eosinophilraredisease.org/medication-assistance-programs/) - Medication Assistance Medication Assistance Funds & Discount Programs The list of organizations below offer a variety of discount programs and assistance funds. These funds vary and can change from day to day. Take time to look into the various funds to see if your disease is a covered disease. Availability of funds for foundations changes
- [Medication: Concept to Delivery](https://www.eosinophilraredisease.org/medication-concept-to-delivery/) - Medication: Concept to Delivery I remember the first time I learned about the process involved in getting a medication to market. I was running a nonprofit for people with Parkinson disease and other movement disorders. My father-in-law had Parkinson’s and I watched his life slip away and my mother-in-law’s life hanging on by a thread.
- [Frequently Asked Questions](https://www.eosinophilraredisease.org/frequently-asked-questions/) - Frequently Asked Question Frequently Asked Questions Has a physician looked at the kit? Yes in fact we have had two rheumatologists (one from Cleveland Clinic and the other formerly with Mayo Clinic), one ER resident, one ER attending physician and a nurse review and or test the kit with us. The comments have been “this
- [THANKS FOR ORDERING!](https://www.eosinophilraredisease.org/thanks-for-ordering/) - Thank you very much for your HEAT Kit request. We are looking forward to getting that in the mail to you. You can expect we will be mailing it in 3-5 business days so we expect it should arrive in 6-10 days - depending on the USPS.In the meantime we have a very brief survey

## Footer Builder

- [Footer 1](https://www.eosinophilraredisease.org/footer/footer-version-1/) - ERDC is dedicated to improving access to quality care and treatments. We develop and distributes practical simple tools for patient populations to improve outcomes in their health care visits with providers and understanding medications and therapies. Facebook Linkedin Navigate Home About Us HEAT™ Kits Resources News Contact (520) 690-4233 info@eosinophilraredisease.org Tucson, AZ, United States, 85757

## Header Builder

- [Header 2](https://www.eosinophilraredisease.org/gva_header/header-2/) - About Us Mission & Values Team & Board Corporate Partners HEAT Kit™ Why get a HEAT Kit™ HEAT Kit™ Components Completing Your HEAT Kit™ FAQ Events Resources Medicare For Rare Disease Medication Assistance Programs Medications & Treatments Resources & Organizations News Vasculitis Decision Tree Donate
- [Header 3](https://www.eosinophilraredisease.org/gva_header/header-2-copy/) - needhelp@krowd.com 66 Broklyn Street, USA Add a Project Sign in or Register About Us Mission & Values Team & Board Corporate Partners HEAT Kit™ Why get a HEAT Kit™ HEAT Kit™ Components Completing Your HEAT Kit™ FAQ Events Resources Medicare For Rare Disease Medication Assistance Programs Medications & Treatments Resources & Organizations News Call Anytime
- [Header 1](https://www.eosinophilraredisease.org/gva_header/header-1/) - needhelp@krowd.com 66 Broklyn Street, USA Add a Project Sign in or Register About Us Mission & Values Team & Board Corporate Partners HEAT Kit™ Why get a HEAT Kit™ HEAT Kit™ Components Completing Your HEAT Kit™ FAQ Events Resources Medicare For Rare Disease Medication Assistance Programs Medications & Treatments Resources & Organizations News Call Anytime

## Gallery

- [Gallery 9](https://www.eosinophilraredisease.org/gallery/gallery-9/)
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## Team

- [Carol Jones](https://www.eosinophilraredisease.org/team/carol-jones/) - Carol Jones is a licensed registered nurse with 40+ years of experience in asthma education and clinical practice. She has been a physician service representative for Allergy Guardian, served as a consultant to the American Academy of Pediatrics on various asthma devices and guidelines and has been involved in asthma related research for more than 20 years. She has served on industry advisory boards and as medical editor for the Allergy and Asthma Network. In her retirement she is serving as a Faith Community Nurse in a large episcopal parish in Tucson, Arizona.

## Services

- [Completing Your HEAT Kit™](https://www.eosinophilraredisease.org/service/completing-your-heat-kit/) - It is now time to put together your HEAT Kit™. The video on this page will walk you through the kit – page by page.
- [HEAT Kit™ Components](https://www.eosinophilraredisease.org/service/heat-kit-components/) - HEAT Kits will arrive on a carabiner. The carabiner allows you to hang the kit near your door for easy access. The ring attached to the carabiner was chosen so that you can remove and add pages as needed.
- [Why get a HEAT Kit™](https://www.eosinophilraredisease.org/service/why-get-a-heat-kit/) - Even the most calm, collected and organized person can find themselves overwhelmed and without critical information when dealing with a health emergency, new doctor, hospitalization – or at any point navigating the healthcare system.

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