All About: Autoimmune

RESOURCES

Up to an estimated 50 million Americans are living with autoimmune diseases and conditions, and the prevalence of these diseases are increasing. Yet, the burden of autoimmune diseases is not evenly distributed: 80% of patients diagnosed with autoimmune diseases are women. Advancing research, improving treatments, and ensuring access to with respect to across autoimmune diseases and conditions is a women's health imperative.

Explore the SWHR Autoimmune Disease Policy Agenda

Improving Outcomes for Women with Autoimmune Diseases and Conditions: A Call to Action is an autoimmune policy agenda outlining key policy needs across research, clinical care, advocacy, and coverage for women living with autoimmune diseases and conditions.

Watch the accompanying Autoimmune Policy Webinar Series, featuring experts from the National MS Society, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the U.S. Department of Labor, the National Psoriasis Foundation, the Arthritis Foundation, the Autoimmune Association, and more!

Tackling autoimmune diseases and conditions is dependent on having a diversity of patients within clinical trials.

Read the policy brief, The Need for Diversity in Autoimmune Disease Research Trials, which reviews how the exclusion of any population from clinical trials limits our understanding of and ability to treat these diseases.

Lupus is a chronic autoimmune disease where the body attacks its own tissues. Ninety percent of Americans with lupus are women ages 15-44.

The Living Well With Lupus: A Toolkit for Women was created to support women living with lupus and their families as they navigate their care.

Psoriatic arthritis (PsA) is an immune-mediated inflammatory disease that causes inflammation in the joints, resulting in stiffness and pain.

The Psoriatic Arthritis Toolkit: A Woman’s Empowerment Guide features tips and strategies to support everyday wellness for women living with PsA.

SWHR's Policy Advisory Council had the honor of hearing from Victoria Shanmugam, MBBS, MRCP, FACR, CCD, the director of the Office of Autoimmune Disease Research in the Office of Research on Women's Health (OADR-ORWH), this March.

“We have realized that we cannot explain everything [when it comes to autoimmune diseases]. We have not yet fully mapped or understood the immune system,” said Dr. Shanmugam.

Look out for a summary of the discussion on the blog this spring. To learn more about SWHR’s policy work, contact policy@swhr.org.

Read more about autoimmune diseases on our blog!

Elevating the Impacts of Autoimmune Disease and Black Women’s Health

The Impact of Coverage Policies on Women with Autoimmune Diseases and Conditions

Education and Access Play Key Role for Improving Well-being for Women Living with Autoimmune Diseases

NEWS AND RESEARCH

SWHR Working Group members have produced the following news, research, and resources related to autoimmune diseases and conditions:

News and Research

American College of Rheumatology: Understanding Stakeholders’ Perspectives to Increase COVID-19 Vaccine and Booster Uptake Among Black Individuals With Rheumatic Conditions, submitted by Rosalind Ramsey-Goldman, MD, MPH, DrPH, Northwestern University Feinberg School of Medicine
Archives of Dermatological Research: Associations between season, climate, and pediatric alopecia areata flares in Providence, Rhode Island, submitted by Eunyoung Cho, ScD., The Warren Alpert Medical School of Brown University
Essence: Turning 20 Years of Pain Into Advocacy, submitted by Diane Talbert, patient advocate for psoriatic arthritis

Webinars and Resources

Bald Girls Do Lunch: Alopecia Areata and You. Tips for Women, submitted by Thea Chassin, Bald Girls Do Lunch, Inc.
Looms for Lupus: Community Empowerment Symposium: Lupus Care & Navigating Health Coverage (In-Person & Virtual Event), submitted by Estela Mata-Carcamo, Looms for Lupus

Know something SWHR should read? Reply to this email or tag us on social media at @SWHR!

SHARE ON SOCIAL MEDIA

Join us on social media as share information about autoimmune disease research and treatment! Follow #SWHRtalksAutoimmune to learn more!

March is #AutoimmuneAwarenessMonth. 4 out of 5 people diagnosed with an autoimmune disease are women. #SWHRtalksAutoimmune

African American and Hispanic women are 3 to 4 times more likely to develop #lupus than white women. There are significant gaps in #autoimmune disease research and in our understanding of how these conditions impact women and communities of color. Learn more in the SWHR “Living Well with Lupus: A Toolkit for Women": https://ow.ly/Q1oY50QP8l0 #SWHRtalksAutoimmune

Globally, the rates of autoimmune disease cases are rising by between 3-9% each year. This is #AutoimmuneDiseaseAwarenessMonth, check out SWHR’s Autoimmune Policy Agenda to read about the #policy steps to improve #autoimmune care: https://ow.ly/oLm950QP8Nb #SWHRtalksAutoimmune

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PARTNER SPOTLIGHT

Our work is only possible with the help of great partners. Check out one of our autoimmune disease partners here!

Autoimmune Association

The Autoimmune Association is the world’s leading nonprofit organization dedicated to autoimmune awareness, advocacy, education, and research.

March is Autoimmune Awareness Month! With an estimated 50 million Americans living with over 100 types of autoimmune diseases, raising awareness has never been more crucial. By making more people aware of autoimmune disease, we can drive progress in research, improve diagnosis and treatment methods, inspire hope, and work toward ending autoimmune disease.

Learn more at autoimmune.org .

All SWHR resources are free to view and share. Here's why: As many as 50 million people in the U.S. have an autoimmune disease.

SWHR's work is only possible with your support

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