Charlotte Höybye

Department of Endocrinology

Karolinska University Hospital

Stockholm, Sweden

Growth Hormone (GH) treatment has been used for treatment of children with PWS for the past 30 years. In contrast, GH treatment has only recently been registered for use in adults with PWS in a few countries, although it is well known from studies in the last two decades that GH secretion is impaired and that some degree of GH deficiency is accepted to be part of PWS. In addition, all studies have shown that GH treatment in adults with PWS improves body composition, physical fitness and psycho-social behaviour and no major side effects have been reported.

It can be speculated why GH has not yet been registered for treatment in adults with PWS. One reason may be that PWS is a multisystem condition and different interpretation of test results from that in the typical population with GH deficiency may be necessary. Another reason could be that a change in height is an excellent and exact variable to monitor, while GH’s metabolic effects are less easy to clinically document in PWS.

GH treatment offers an opportunity to reduce some of the adverse consequences of PWS by improving body composition and quality of life. The knowledge that GH treatment is now registered for treatment in adults with PWS in a few countries is therefore highly acknowledged. GH has an important role in optimisation of care in PWS, and hopefully a registration of GH for adults with PWS in more countries will follow soon.


Charlotte has been involved in setting up a meeting in Prague from 22nd to 23rd May 2020 hosted by INfoRMEd-PWS and the European Society of Endocrinology to talk about the care of adults with PWS.

This meeting is targeted towards International experts and non-experts with special interest in the care of adult patients with Prader-Willi Syndrome. Although the focus will be on internal medicine and endocrine aspects, it will also be interesting for other disciplines like cardiologists, nutritionists, clinical geneticists, physicians for intellectual disabilities and paediatricians. Nurses, physiotherapists, dietitians, psychologists, and professional caregivers are also welcome.

The event is taking place immediately before the European Congress of Endocrinology. For more information click here.