Ignore No More: Sarcoidosis, The Rare Disease African American Women Need to Know
Research shows sarcoidosis impacts African American women at a higher rate than other patients with sarcoidosis. They have more severe and chronic forms of sarcoidosis, higher rates of hospitalization, are more likely to experience depression and have a higher mortality rate than Caucasians and African American men.
Watch this webinar moderated by W. Ennis James, MD, Medical University of South Carolina and featuring Ogugua Ndili Obi, MD, MPH, MSc, Brody School of Medicine at East Carolina University, and patient advocates Rhonda Underhill, Erica Courtenay-Mann, Mary Oldham, and Kathryn Washington.
Click here to watch the video.
Sponsored by Mallinckrodt Pharmaceuticals.
Universal Barriers in Dealing with a Chronic Disease: A Sarcoidosis Perspective (01/25/2022).
FSR sarcoidosis patient advocates and sarcoidosis expert discuss the universal barriers experienced by chronic disease patients. By identifying and understanding the universal barriers that exist for all patients, we can work together to address them and help improve care for our sarcoidosis community.
8th Annual Healthy Churches 2030 Conference (11/15-18, 2021)
The 8th Annual Healthy Churches 2030 Conference hosted by The Balm in Gilead is a global, virtual event connecting faith and public health to create solutions for eliminating the burden of sickness and health disparities in the African American community. FSR will lead a session "Ignore No More: Sarcoidosis, The Rare Disease African-American Women Need to Understand" with Dr. Divya Patel, Dr. Ogugua Obi and Erica Courtenay-Mann.
Black Women’s Health Imperative webinar (11/4/2021).
This webinar was produced by the Black Women’s Health Imperative’s (BWHI) Rare Disease Diversity Coalition (RDDC). Featuring: Cheryl Bradford, Sarcoidosis Patient & Advocate, Adrianna Hopkins, Moderator, TV Anchor, WJLA, Mary McGowan, CEO, Foundation for Sarcoidosis Research (FSR), Divya Patel, M.D., DO, Director, Sarcoidosis & ILD Programs, University of Florida, Jessica Reid, RN, Sarcoidosis Patient & Advocate, Kineta Sealey, Esq., Policy Counsel, Black Women’s Health Imperative (BWHI) and Rhonda Underhill, Sarcoidosis Patient & Advocate. Click here to learn more.
Global Genes RARE Patient Advocacy Summit (9/27/2021): Poster Presentation Empowered Patients Shed Light on Disparities Among African American Women with Sarcoidosis; Mary McGowan moderated a session on diversity.
Black Health Matters Building the Bridge Summit (10/9/2021): Expo booth featuring campaign
NORD How to make Clinical Trials More Diverse and Equitable (10/19/2021): presenter Mary McGowan
SarcFighter Podcast: Women of Color Fight Back! (10/13/2021): John Carlin with Dr. Ennis James and Chasta Posey. Click here to listen to the recording.
SarcNews Article (10/21/2021): Campaign Focuses on Impact of Sarcoidosis on African American Women with Dr. Divya Patel and Garrie Farrow. Click here to read the article.
NIAMS Raising Awareness – Educating and Motivating the General Public (10/27/2021): Best Practices for Engaging Underserved Communities (presenter: Khaleelah Cohen, FSR Special Projects Consultant).