This reference site is to help people who have Eosinophilic Fasciitis (Shulman’s syndrome), and their doctors and carers. On this page are links to medical sites, academic documents and patient forums. There are EF studies and case reports on the Studies page which you can download. But the fastest way to get answers to your EF questions is to use the Chats page.
The Drugs page lists the drugs being prescribed for EF and some evidence in support of each drug.
The Statistics page has been compiled from the online postings of around 400 EF patients. It also gives an estimate of the Prevalence of EF in the USA.
The Treatment page shows what has been working for EF patients who post online.
Medical sites
MSD Manual (brief summary)
Medscape (requires login)
Apfed (sample patient story)
Academic papers
National Library of Medicine
Bielefeld University Library
Oxford Journals
UpToDate
Patient forums (most active first)
Facebook (an interactive community of EF patients)
PatientsLikeMe (collecting data for research)
Inspire (some postings by EF patients)
[updated: 2025-03-19]