Contact Your MP
Fabry Australia encourages you to develop a relationship with your local Federal MP and share with them your current experience of living with Fabry Disease. You could tell them about Fabry Australia whom you are a member of and the shared goals you have with the patient organisation. Ask for them to join the Parliamentary Friends of Rare Diseases and become an active participant and supporter.
Why? It is important that Fabry disease is understood, researched, managed in a multidisciplinary hospital system. The costs associated with all of this is decided by Government. To ensure that Fabry Clinics and ongoing research is suported, clinics need to be sustainable and this can only happen if they are embedded in the public healthcare system. Policy is important to support ongoing care and management of Fabry patients and to ensure Fabry health care professionals receive adequate funding to manage clinics.
Some ideas include;
To find your local MP, please click here.