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Irma, CNE: My name is Irma. I’m the clinical nurse educator.
When I go to the patient’s house, the first thing I do is I introduce myself and my role and why I’m there for that day. I give ‘em an opportunity to just share everything that they’ve been through.
Jeannie: I’m Jeannie, the mother of Thaddeus. My son is 9 years old, and he was diagnosed with CGD at 6 years old.
The great thing about the support services is that it helps you not to feel alone. Just having that person that you know that you can call, and they can come and visit, and they can get to know your child and know you.
Irma We offer education, support, and advocacy. They can pick up the phone and call us. We’re there with them.
Jeannie: One of the most important things is when she described the CGD to Thaddaeus to help him understand what was wrong with his system, what caused it. That it wasn’t his fault.
Irma: I let them know that it’s an inherited primary immunodeficiency disease. It affects the child’s ability to fight infection. It doesn’t mean that they have to be isolated from the world. It doesn’t affect who they are. They just need to be careful.
Jeannie: I encourage any new families to take advantage of the support services, ‘cause the support team is fantastic.
With Amgen By Your Side, you’ll have a support team that includes a dedicated Clinical Nurse Educator (CNE) to guide and support you through every step of your journey. Together, they will:
- Get nonmedical educational support
- Avoid surprises at the start of treatment by talking about what to expect
- Discuss how your new treatment can fit into your routine and meet your goals
- Understand financial assistance options
- Learn about the insurance process
- Coordinate delivery with the specialty pharmacy to schedule shipments of your medicine
- Get injection training and support
- Connect to a sharps disposal program for easy needle and syringe pickup and disposal
- Receive refill reminders to help you stay on ACTIMMUNE as your doctor has instructed
- Connect to advocacy groups for more support and to inform you of events in your area
MEET OTHERS WITH CGD
When living with a rare condition, it can be helpful to know you’re not alone. Hear stories about taking ACTIMMUNE and more.
FIND YOUR LOCAL CARE TEAM
Your care team could include different specialists. Use the CGD Specialist Finder to locate the support you need.