Updated: Dec 11, 2019
Contributed by Marguerite Hughes, Vice President, IPWSO
Hosting educational booths at medical conferences has long been a means by which IPWSO has sought to raise awareness of Prader-Willi syndrome and the services it provides.
IPWSO’s recent participation in the European Society of Paediatric Endocrinology (ESPE) Conference in Vienna, Austria once again reminded us why such booths continue to be important.
Over the course of 3 days, 370 free flash drives containing information about PWS in a variety of languages were collected from the IPWSO booth. 168 delegates from 54 countries signed up to IPWSO’s mailing list.
The issues raised by the steady stream of visitors to the booth provided a useful insight into the current concerns of endocrinologists who treat people with PWS. Securing Growth Hormone Treatment for adults with PWS was by far the most commonly-raised challenge. Questions about clinical trials and the prospect of new treatments were also frequent. So too were questions about challenging behaviour. A relatively large number of delegates also talked about patients who were “PWS-like”, but did not have PWS.
Given the emergence of new genetic testing facilities around the world, one of IPWSO’s objectives at ESPE was to assess whether the need for the free PWS diagnostic testing service that it provides remains as acute as in previous years. The conclusion was that this service does remain very important as doctors from 14 countries reported that diagnostic testing for PWS was either not available at all or only available to families who could afford to pay. In one case a doctor warmly thanked IPWSO for this service and pointed out that all 22 people diagnosed with PWS in her country had been tested using IPWSO’s free diagnostic testing service.
IPWSO also had reason to be proud as many delegates complimented Prof. Maïthé Tauber who presented on the first day of ESPE and Dr. Susanne Blichfeldt who has attended regional and national conferences in many countries on behalf of IPWSO. Both Maïthé and Susanne are valued members of IPWSO’s Clinical and Scientific Advisory Board.
While IPWSO’s work received many compliments, it was also clear how much remains to be done if IPWSO is to fulfil its mission. Many visitors to the IPWSO booth had very limited knowledge of PWS. Some spoke of problems accessing treatments that are taken for granted in other parts of the world. Many requested translations of materials and other supports. Some reported that in their countries PWS is typically only suspected or tested for when people are obese.
All of the costs associated with IPWSO’s participation in ESPE 2019, as well as the costs of IPWSO’s free diagnostic testing service in 2019, have been covered by a generous grant from Soleno Therapeutics, which is currently conducting Phase 3 trials of Diazoxide Choline Controlled Release (DCCR) for the treatment of Prader-Willi syndrome.