Rare Autoimmune Diseases

A rare disease is defined as a disease affecting fewer than 200,000 people. Autoimmune and immune-mediated inflammatory diseases are chronic conditions that are caused by a person’s immune system mistakenly attacking the body’s own healthy tissues and organs. Many autoimmune diseases are also considered rare diseases.

Approximately 15 million people in the United States are diagnosed with at least one autoimmune disease, and more than 30 million Americans are living with at least one rare disease. Many rare autoimmune diseases differently or disproportionally impact women. Yet, of the more than 10,000 known rare diseases, fewer than 5% have an approved treatment

The Rare Autoimmune Diseases program is part of the SWHR Autoimmune Network and the Rare Disease Network.

Program Goals

  • Increase patient awareness of the impact of rare autoimmune and immune-mediated inflammatory diseases effect on women across the lifespan.
  • Raise public and stakeholder awareness of rare autoimmune diseases in women.
  • Develop materials and resources that increase understanding of the range of rare autoimmune diseases affecting women.

Facts about Rare Autoimmune Diseases

4.6%

 of the U.S. population has been diagnosed with at least one autoimmune disease1

5.4 years

on average to receive diagnosis in women with rare diseases in Europe2

~60%

of autoimmune patients are women, and many autoimmune diseases are considered rare3

Rare Autoimmune Disease in Women

An SWHR Fact Sheet

Recent Resources

See more resources
Fact Sheets

Rare Autoimmune Disease in Women

 Peer-Reviewed Articles

Women’s Health Research Agenda

2025 SWHR Women’s Health Research Agenda: Prioritizing Uterine Fibroids, Lupus, and Metabolism highlights persistent areas of need in women’s health...

 Peer-Reviewed Articles

Autoimmune Health Crisis: An Inclusive Approach to Addressing Disparities in Women in the United States

A review in International Journal of Environmental Research and Public Health, provides an overview of the impacts of autoimmune diseases...

 Webinars & Videos

Up to Our Neck in Autoimmune Thyroid Disease: A Lifespan Look at Women’s Health

References
1. https://pubmed.ncbi.nlm.nih.gov/39666393/
2. https://www.nature.com/articles/s41431-024-01604-z
3. https://pubmed.ncbi.nlm.nih.gov/39666393/

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