We are delighted to announce the publication of the "Physiotherapy for epidermolysis bullosa: clinical practice guidelines" in the Orphanet Journal of Rare Diseases!
The guidelines have been created to provide evidence based interventions and best clinical practices for the physiotherapy management of individuals living with EB. A survey was carried out within the international EB Community and six priority areas to address in the guidelines were identified:
attaining developmental motor milestones
identifying safe and functional mobility in the natural environment
encouraging ambulation endurance (the action of moving about, walking)
supporting safe ability to bear weight
improving access to physiotherapy services, and
optimising interaction with the community.
We would like to congratulate the clinicians, carers, and individuals living with EB who formed the guideline development team on their achievement and also thank everyone who contributed to the work including the reviewers and those who completed the initial survey.
It is a great resource, which will help many people living with EB around the world. The guidelines, funded by debra of America are available to download for FREE here: https://www.debra-international.org/physiotherapy-cpg
COMING SOON! The opportunity for you to provide your experiences of physiotherapy for inclusion in the patient versions of these guidelines!