Resources for Learning More

There is a patient advocacy group called FDRS (Fat Disorders Research Society). They host annual patient conferences that bring the latest news to all. FDRS's website contains a lot of information. FDRS’s Facebook Page contains announcements and their Maillist announces important happenings. The FDRS Treatments Diagram is an especially useful tool to show what patients can do for themselves while waiting for diagnosis and treatment.

FDRS's YouTube channel has videos, including diagnosing, conference talks, and self-care tools. Start with the Primer and Diagnosing Part 2 videos.

In 2016, the Milken Institute's Center for Strategic Philanthropy was hired to write a Research Landscape Report. The MI CSP's Giving Smarter Guide for Lipedema took about a year to produce and was done after carefully consulting with many researchers.

Two good educational materials out of the UK include a physician training course, Early lipoedema diagnosis and the RCGP e-learning course, and the UK Best Practice Guidelines: The management of lipoedema 2017.

The FDRS offers free enduring Continuing Medical Education (CME) for Providers based on their 2016 conference and will offer it again in 2017.

The University of Arizona TREAT program has published their TREAT Medications and Supplements lists which identifies medications and supplements that support people with lipedema.

The Lymphedema and Lipedema Nutrition Guide book is an amazing, well-researched resource that helps people identify practicable changes to eat healthier foods that support people with lipedema and lymphedema. Chef Michele Ligouri has put together a set of recipes that tries to follow the guidelines in the book and is aimed for a busy family with divergent health needs.

The Photo Gallery of Lipedema and Dercum’s patients has about 1,000 photos displaying the effect this disease has had on many bodies and some of the many variations in these diseases.

There are many private Facebook groups, and we highly recommend joining some of them to ask your questions there, especially where to find caregivers close to you. Go to Facebook and search on Lipedema and Lipoedema. The best large group is the Lipedema Sisters USA group.

The Dutch published their Lipedema management Guidelines in Netherlands in 2014: Guidelines in the Netherlands and here is the Patient Version.

The German Guidance Detailed View Lipedema was published in 2015: German page; Google Translate to English version of short guidelinesGoogle Translate to English version of long guidelines.

Lastly, in order to receive notifications of new information, videos and conferences, be sure to Like us on Facebook, Follow us on Twitter, Subscribe to the FDRS YouTube channel, and join our Maillist.