Self-Advocacy
Self-Advocate for Early Diagnosis and Treatment
Being diagnosed with an immunodeficiency can be a challenging and overwhelming journey. Often times it can take individuals years of frustrating appointments with doctors and specialists to receive a diagnosis.
However, it is important to remember that there are steps you can take to empower yourself during the diagnosis process. That’s why we have teamed-up with Blue Wren Advocacy to develop self-advocacy tools specifically tailored to individuals with immunodeficiencies who are navigating the diagnosis journey and the early stages after diagnosis.
Our self-advocacy tools are designed to help you communicate effectively with healthcare providers, understand your diagnosis and treatment options, and make informed decisions about your health. We believe that self-advocacy is key to receiving the best possible care, and we are committed to supporting you in this process.
We encourage you to explore our self-advocacy toolkit to help you navigate this challenging time. By using these tools, you can take an active role in your healthcare and ensure that your needs are being met. Remember, you have the power to advocate for yourself and to make informed decisions about your health.
Download the tools, and print-them-out or fill-them-in on your device to start your self-advocacy journey.
Patient Template Health Information Summary
Patient Template Medical Appointment Checklist
Patient Template Symptom and Treatment Diary
Template Advocacy Plan
Template Simple Advocacy Plan
Hear from some of our members about our Self-Advocacy Toolkit
Self Advocate for Improved Air Quality
Poor indoor air quality can increase the spread of airborne illnesses like colds, the flu, and COVID-19 — posing a serious risk to people with immunodeficiencies and other chronic health conditions. The Safer Air Project was created to advocate for the recognition of indoor air quality as a critical accessibility and inclusion issue, and raise awareness about the impact of poor indoor air quality on the well-being of high-risk populations.
The Safer Air Toolkits offer tailored resources to help individuals advocate for cleaner, healthier air in the spaces they live, work, learn, and receive care. Whether you’re a community member, employee, patient, or involved in education, each toolkit provides guidance, tools, and strategies to support your advocacy efforts.
CO2 Monitor Purchasing Guide
There are many types of CO2 monitors available, and they vary in terms of features, accuracy, and price. Our guide will help you choose the right CO2 monitor based on your specific needs, whether it’s for your home, school, workplace, or another indoor setting.
Employee Advocacy toolkit
The employees Advocacy toolkit is for employees who want to advocate for safer air in the spaces they access in their workplace.
Portable air filter purchasing guide
Portable air filters, like HEPA filters, can improve indoor air quality by removing viruses, allergens, and other harmful particles from the air we breathe. This purchasing guide can help you choose the right filter for your needs.
Healthcare Advocacy toolkit
The Healthcare Advocacy toolkit is for patients who want to advocate for safer air in the settings where they access healthcare.
Community Advocacy toolkit
The community Advocacy toolkit is designed for members who want to advocate for safer air in the spaces they access in their community.
School Advocacy toolkit
The School Advocacy toolkit has been designed for parents, guardians, and school staff who want to advocate for safer air in schools.