Community partners

Empowering independence: Dave's CVID journey

Format: Online video
Created by: Accredo Specialty Pharmacy

For patients living with chronic, complex conditions like common variable immune deficiency (CVID), every moment of stability, freedom, and health matters. Dave, a long-time CVID patient, knows this firsthand. His journey highlights how Accredo Specialty Pharmacy, part of Evernorth Health Services, empowers patients through personalized support and clinically focused care. 

Explore self-infusing with Ig: Patient education with Q & A sessions

Date & time: Twice each month (various dates and times). The program runs through December 2026
Hosted by: CSL Behring

Free educational programs for primary immunodeficiency (PI) patients and their caregivers. These programs feature a presentation from a trained nurse and stories from a PI patient advocate.

Get support throughout your treatment journey

Resource: Ongoing medication support
Provided by: CVS Specialty 

Learn about immunodeficiencies and how CVS Specialty can support you throughout your treatment journey, including traveling with medications and managing side effects.

4Ward study: A chronic neutropenia study is now enrolling

Date & time: This is a two-part study that lasts for 7-9 months
Hosted by: X4 Pharmaceuticals

The 4WARD Study is a Phase 3 study, or clinical trial. The goal of the 4WARD Study is to learn more about the oral investigative study medicine, mavorixafor. The study will evaluate if mavorixafor may increase neutrophil cell counts, may decrease the chance of getting infections and is safe and well tolerated. 

Help researchers evaluate a digital education tool for immunodeficient patients

A 15-minute online survey to provide feedback on new video from Nationwide Childrens Hospital
You may be eligible if you hava  diagnisis of primary (genetic) immunodeficiency OR have received, or are going to receive, a bone marrow transplant (BMT). 

Mas Que Raras Podcast

A Spanish-language podcast focused on sharing stories and experiences of the Hispanic community regarding rare diseases, aiming to increase awareness and understanding of the challenges faced by Latinx individuals living with rare conditions.
"Más Que Raras" es un podcast en español basado en las experiencias de personas hispanas en el mundo de las enfermedades raras, y a menudo destaca los obstáculos únicos que enfrentan los pacientes de habla hispana.