New health equity initiative launched for immune deficiencies

Six organizations representing diverse populations work strategically to build synergy and amplify health priorities.

Baltimore, MD

Six organizations, the Immune Deficiency Foundation, National Coalition for LGBTQ Health, National Medical Association, Association of Minority Health Professional Schools, Inc., National Pharmaceutical Association, Rare and Black, and the Rare Disease Diversity Coalition have joined a strategic partner roundtable to share resources and strategies guided to reach underserved populations.

“Approximately 2.7% of the U.S. population is moderately to severely immunocompromised. This means that more than nine million people have immune systems that do not function properly. We are thrilled to partner with these organizations to build synergy around a rare disease that is often ignored in marginalized communities,” states Jorey Berry, president and CEO of the Immune Deficiency Foundation.

Partnership goals:

• Raise awareness of primary immunodeficiency (PI) and provide resources to healthcare professionals representing and serving medically underserved populations. 
• Expand the diversity of PI educational and research opportunities. 
• Promote PI resources and education to reduce health disparities in underserved and marginalized communities. 
• Build synergy on PI and health equity priorities.  

Primary immunodeficiencies (PI), also known as inborn errors of immunity (IEI),    are a group of more than 450 rare, chronic conditions in which part of the body's immune system is missing or does not function correctly. PI is rare and often missed as a diagnosis by primary care physicians. The average time between the onset of symptoms and diagnosis is 9-15 years,  and experts believe that more than 70% of people with PI remain undiagnosed.

“Our team at the Immune Deficiency Foundation is honored to join forces with these historically significant organizations to build a more inclusive community,” says Aimee Yrlas Simpson, vice president of advancement and strategic partnerships at the Immune Deficiency Foundation. “Immune deficiencies are often invisible, difficult to detect, and potentially debilitating. Spreading awareness leading to earlier diagnosis and treatment can be lifesaving.”

These conditions are caused by hereditary genetic defects and can affect anyone, regardless of age, gender, or ethnicity.

PI can cause infection, malignancy (cancer), allergy, autoimmunity, autoinflammation, or any simultaneous combination of these issues. A person with PI may also have autoimmune conditions like irritable bowel syndrome, lupus, or rheumatoid arthritis. Those with PI are at an increased risk of allergies and certain cancers, including lymphoma and leukemia.

Who is IDF? 

The Immune Deficiency Foundation (IDF) is the largest primary immunodeficiency (PI) patient advocacy group in the United States, with 44 years of expertise in primary immunodeficiency. As such, we take pride in helping to connect, engage, and empower families to live longer, stronger, healthier lives. Whether you are looking for subject matter experts on PI (clinicians or patients), information about an upcoming event, or a statement from the organization on a particular topic, we can offer guidance and resources in a variety of areas, including:

• Stories of rare, chronic, or invisible illness.
• Insurance access challenges.
• Plasma supply (and plasma-derived therapies).
• Issues related to the immunocompromised.
• The importance of newborn screening (particularly related to SCID).
• Genetic and inherited conditions.
• General healthcare or nonprofit topics.
• Difficult/long journeys to diagnosis.