About Degos Disease Foundation
Who We Are
Degos Disease Foundation is a dedicated team of professionals from around the world, who share their research, clinical findings, and contact information on this website. They have made themselves available to patients and physicians seeking accurate diagnoses and effective treatments for their patients with Degos disease.
We encourage all Degos patients to share their stories to help physicians better understand the effects of Degos disease on their patients. We also have a goal to create an international patient registry to better track and care for all patients diagnosed with Degos disease.
Medical professionals who are seeking help for their patients, will find information on diagnosing and prognosis, and links to other medical sites and to ongoing research.
The Degos disease website is an international information resource and networking site for patients, researchers, physicians, and all who are effected by Degos disease globally.
Our website is administered and updated by Steffens Board member Theresa Slayton, who has Degos herself. This is invaluable to those seeking critical help with this disease. Recently, we have received inquiries from England, Germany, California, Michigan, and Colorado. Contact Theresa Slayton here.
Degos Disease Study Group
We have organized a world-wide "Degos study group" which meets quarterly to review new approaches to diagnosis, treatment, and understanding of the pathophysiology of the disease.
Get in Touch
Feeling lost or in need of assistance? We’re here to support you! Don't hesitate to reach out to us today.
The Steffens Connection
Why is the Steffens Scleroderma Foundation Involved?
Degos Disease Foundation is part of a larger nonprofit organization called Steffens Scleroderma Foundation (501c3) based in Albany, NY. Which is why when you donate to us, your donations will go directly to Steffens Scleroderma Foundation to manage to funds accordingly.
Scleroderma and Degos diseases—although different rare diseases—have shared pathologic features. In each disease, there is damage to small blood vessels and impaired ability to repair the damage. Degos disease can also involve the heart and lung linings, showing fibrosis similar to Scleroderma's pathology.
A Little Bit About Steffens Scleroderma Foundation
The Steffens Scleroderma Foundation’s mission is to:
Support and promote research toward treatment and cure of scleroderma, Degos disease, and other related disorders
Promote awareness and understanding of these disorders, especially among healthcare professionals
Encourage collaborative efforts, nationally and internationally, aimed at realizing these goals
Named in memory of Ann Elizabeth Steffens, a scleroderma patient who had an unparalleled desire to make a difference—the foundation was made possible by a generous gift from her mother, Helen Polenz. We proudly carry on Ann’s spirit of helping others and one day hope to spare families from losing a loved one to these diseases.
In 2005, the first international Degos disease meeting was in Berlin, and the second was in Boston in 2007. The third was in Saratoga Springs in 2016. With every meeting, the Steffens Foundation saw a gradual increase in numbers of patients and contributing medics, which all lead up to the Steffens Foundation co-sponsoring the International Degos Disease Symposium at the National Institutes of Health (NIH) in 2018. Additionally, the foundation provided financial support for the symposium, and Drs. Whelan and Shapiro were on the organizing committee. The Steffens Foundation continues close collaboration with the Degos Disease team at the NIH.
Drs. Whelan and Shapiro organize international, virtual meetings on Degos disease quarterly that are attended by researchers involved in the investigation of Degos disease, rheumatologists, gastroenterologists, and dermatologists. Dr. Farrell presented "Clinical Pearls & Approach to Treatments” to the online, international meeting for Degos disease on June 2023.
Dr. Farrell is an international resource to physicians by providing details on the latest treatments and for helping patients navigate the challenging medical system and obtaining the medications needed.
Steffens Scleroderma Foundation provided support for research presentations on Degos disease by medical and pharmacy students and our research assistant, Hannan Bowen. Samantha Sattler—an Albany Medical College student—was lead author on the definitive review of gastrointestinal Degos disease.
With doctors constantly pushing the boundaries of medical research, our future is looking brighter than ever. The members of the board (Drs. Whelan, Farrell, and Shapiro), are involved in identifying new treatments for Degos disease by promoting disease awareness for earlier diagnosis and rapid diagnosing of systemic diseases in individuals with skin involvement.
Drs. Whelan and Shapiro are coauthoring a chapter on Degos disease for the electronic medical text “UpToDate”. Drs. Shapiro and Magro, (Dr. Magro is the world’s expert on the pathology of Degos disease), coauthored a chapter on Degos Disease that will appear in a textbook on vasculitis in 2024. Additionally, Drs. Shapiro and Magro are currently at work on a review of “Long term survivors of Degos disease”.
Please visit the Steffens Scleroderma website for more information and to stay up to date on the latest news!
Support Us
With your support, we're making groundbreaking research happen. Explore our events page or make a donation!
Patient Stories
Hear firsthand accounts of resilience and hope from patients with Degos disease and their families.