Extra Support

Free Patient Support Australia 1800 369 963

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.

Free Pompe Support - Australia & New Zealand