Using the Medical Overview leaflets in Australia
Last autumn AGSD-UK received a request from Raymond Saich OAM of the Australian Pompe Association. He asked whether they could use the PST MO leaflets. Of course, PST agreed but added that it would be wise to include a proviso that the information was collated in the UK.
Educating newly qualified doctors
“We have found the MO leaflet very valuable, there is an ongoing challenge to inform our treating doctors about Rare diseases like Pompe. Most of the doctors I speak with are very interested in Rare diseases like Pompe, they gladly accept the MO leaflet and often ask if they are ok to share it with their colleagues.
Educating newly qualified doctors and other medical professions about Pompe is also an ongoing issue. In Australia newly qualified doctors are inundated with information and documents like the MO are an easy guide that can be delivered in person hand to hand.”