Links

Information on Pompe disease, treatments and clinical trials are constantly evolving.

Listed below is also a comprehensive list of disability services available in every State in Australia, including the NDIS. If you are having trouble finding resources or not sure where to start finding the right services for you in your state, contact your free nursing support service 1800 369 963

Below are links to some of our partner organisations here in Australia and around the world to help source the latest and most up to date information.

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

Clinical Trials and Treatment Access

Clinical Trials within Australia

For a comprehensive list of clinical trials here in Australia, follow the link below. Type pompe disease into search field.

Clinical Trials around the world

For a comprehensive list of clinical trials both here in Australia and overseas, follow the link below. Type pompe disease into search field.

Australian Disability Support Services- State by State

Commercial

International