Dear aPSGA members, family and friends.
Have you ever shared your story of aHUS with your local Federal MP?
Is your Federal Member aware of your situation at all? Do they even know you live in their electorate?
Do you know how to reach out to your Federal Member?
Rare Voices Australia (RVA) launched Parliamentary Friends of Rare Diseases in November 2014, of which all Ministers and Senators are members of this group.
aPSGA has a template letter to assist you with reaching out to your local Federal Member. Please contact us at email@example.com to request a copy of this template letter.
To communicate with your local Federal Member:
- Research who they are
- Produce a letter, outlining your personal experience with aPSGA, and the importance of securing access (ongoing or otherwise), to Soliris. Be sure to include the aPSGA website for further information, and email the letter to their office
- Contact their office a couple of days later to set up a meeting
- Meet with your local Federal MP to inform them about your situation and the urgency of resolving it and request their assistance in doing so
- Maintain contact with your local Federal Member, build a strong relationship, and ask them to continue acting as your advocate.
Let us know how you go!