Care Guides for Facioscapulohumeral Muscular Dystrophy
A care guideline for FSHD by the American Academy of Neurology (AAN) was published in 2015 and based on this Evidence-based Guideline Summaries were created for patients and their families and clinicians. The full article that these summaries were based off can be found here.
Summary of Evidence-Based Guidelines for Clinicians
Summary of Evidence-based Guidelines for Patients and their Families
FSHD Guide for Schools
The FSHD Society has also created a guide for schools. The purpose of the guide is to provide information FSHD and the impact it can have on students’ experiences
during the school day therefore helping schools to be able to prepare for some of the challenges faced by students with FSHD, and to facilitate a positive experience. The guide has gathered information from scientific reports, current and former students, and school staff who have experience working with students with FSHD.