Resources and Education
Battling DRESS Syndrome can be emotionally and physically difficult, and this condition's complicated nature can quickly become overwhelming. We understand how challenging this experience can feel. So, our goal is to provide resources that can help you make sense of this debilitating severe drug reaction.
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We will do our best to bring you evidenced-based, relevant information. Here you'll find a collection of resources about DRESS, including the latest research and how to report your case of DRESS Syndrome to the FDA . (Note: All blue headers below are live links.)
Research and Information
Find published resources and research on DRESS Syndrome
An educational podcast with patient and medical expert interviews produced by our Foundation
Download our resource:
Know the Facts About DRESS Syndrome
DRESS Patient Information Page in JAMA Dermatology (Journal of American Medical Association)
JAMA is a leading medical journal providing patients with information on medical conditions.
National Organization for Rare Diseases (NORD) – Page on DRESS Syndrome
An overview on DRESS Syndrome, as well as additional resources about rare diseases
Human Herpes Virus 6 (HHV-6) and DRESS
An overview of HHV-6 to help you better understand what this virus is and its importance in DRESS Syndrome.
Understanding Pharmacogenomics
Get a better understanding about the relationship between the genes we carry and the drugs we take.
Organizations
Center for Drug Safety and Immunology (VUMC/CDSI)
CDSI is a center of excellence in human immunology that operates under the umbrella of the broader personalized medicine enterprise at Vanderbilt University Medical Center (VUMC). The organization's key scope and purpose is to advance understanding of the genetic and mechanistic basis of immunologically mediated adverse drug reactions.
Severe Cutaneous Reactions to Drugs (SCARs)
Here you'll find other nonprofits, organizations, and information regarding SCARs, including Stevens Johnson Syndrome SJS/TEN.
Government and Case Registries
Food and Drug Administration (FDA) Database
The FDA Adverse Event Reporting System (FAERS) is a database that contains reports made on adverse events to medications. While your medical team should report your case of DRESS to the FDA, it's important that you also report your case to insure that the FDA counts every case.
DRESS Cases reported to FAERS to date (as of 5/16/24): 23,640 reported cases. 1,609 deaths
To view reported DRESS information on FAERS, be sure to:
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Select "Search by Reaction Term"
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Search with the full name — Drug Reaction with Eosinophilia and Systemic Systems
Report your DRESS case through the FDA's MedWatch Online Voluntary Reporting.
DRESS Syndrome Foundation Case Registry
Our Foundation manages its own DRESS Syndrome case registry. By registering your case with us, we can connect you to medical research about DRESS, when appropriate.
United States Drug Allergy Registry (USDAR)
A multi-center longitundinal prospective cohort, run by a team of allergists dedicated to improving clinical care while promoting publish health and scientific discovery. They do so through improving drug allergy evaluation and management, particularly penicillin (PCN) allergies.
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* We are currently compiling a list of international registries and are in the process of updating our website with this information.
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Legal: This website is for information purposes only and is not intended to diagnose or treat DRESS or any other type of disease. Every patient’s situation is unique. We are a patient advocacy organization and are not medically trained. Never disregard professional medical advice or delay seeking it because of something you’ve read on this site. In the hope of creating better awareness, we encourage you to share what you learn here with your medical team and others. If you think you may have a medical emergency, call your doctor or 911 immediately.