Emily is the Nurse Program Manager at Sonic Nurse Connect in the Care4rare patient support program.
Emily has worked for a number of years managing patients with Fabry, Gaucher and MPSII and she is really excited to be given the opportunity to provide support for people living with Pompe, which is a new addition to their rare disease profile.
The types of services Emily will be able to provide for you will be:
Answering your medical questions and explaining your test results
Exercise and diet recommendations
Mental health assistance
Support when seeking NDIS services and funding
Explain any genetic testing you have had or need to have
Advocate on your behalf to other medical professionals
See the Care4Rare_Patient_Brochure_ for a full list of services. This program is FREE for ALL people living with Pompe within Australia. You can access these services whether you are on the Life-saving Drug Program, on a clinical trial, have not yet started or are not on treatment at all.
If you are also looking for advice on testing for Pompe Disease here in Australia, either as a patient or medical professional, you can use this free service.
Emily- Care for Rare Nurse- Australia
Meet Emily Mamo, your very own Pompe Nurse, introducing herself and her services during the 2021 Australia & New Zealand Pompe Conference.