Rare Voices Australia launched the Parliamentary Friends of Rare Diseases in November 2014. RVA Patron, The Honorable Michael Kirby, welcomed Parliamentarians at a special bi-partisan event held at Parliament House Canberra. All Ministers and Senators are members of Parliamentary Friends of Rare Disease.
How can you help?
Have you ever told your local Federal MP about your personal connection with rare disease? Do they know you live in their electorate? It is time to share your story and introduce yourself. RVA has developed a few tools to assist you. Go to the RVA website, download a template letter, adapt and use and tell them why you would like to see Australia with rare diseases looked at as a National policy with their support.
- Make an appointment to meet your local Federal MP.
- Hand deliver the letter you write.
- Tell them your story, tell them about RVA, tell them to join RVA’s Parliamentary Friends of Rare Disease.
- Share the Communique – Principles/ Objectives – National Rare Disease Plan.
- Ask them if you can keep them up to date from time to time.
- Build a relationship with your MP and ask them to help you.
- Tell them about Parliamentary Friends of Rare Diseases.
Until rare diseases are recognised as a national priority and have an official National Strategy adopted, rare diseases largely remain invisible. Internationally the united front amongst the rare disease community, uniting as a critical mass has resulted in positive change for people living with a rare disease.
Without a national approach to rare disease it is much harder for people living with a rare disease to receive direct access to safe, effective and appropriate information, educational resources, care, services (health, social, education) and treatment within Australia. It is also difficult to access research, clinical trials, collect data and information which in turn impacts researchers, health professionals and many others who care and support people living with a rare disease.
By sharing your story and raising awareness of the importance in adopting a National strategy for rare disease, we will be one step closer to making this ‘dream’ a reality. But will only get there by uniting and working together as a combined voice of big and little rare voices.
Other ways to help RVA help you
RVA needs you to help us so we can continue to help you. There are many ways you can support and help us. Go to the RVA website and take a look. Thank you in advance for your continued support. Together we are a ‘unified voice for ALL rare diseases’