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Rare Voices Australia supporting Rare Diseases

Posted on Wednesday, 30 April 2014

Anita and Susan on behalf of the Association took up the invitation to attend a Brisbane based meeting hosted by Rare Voices Australia to celebrate Rare Diseases Day which was held Australia wide on February 28th 2014. Rare voices is an Australian not-for-profit organisation aimed at providing a voice for all Australians suffering from a rare disease.

Myasthenia Gravis certainly qualifies under the internationally used description of a rare disease. There are 8000 such diseases and they affect in total 6-8% of the Australian population. Currently, the Federal Health Department has issues recognising individual conditions within this group. It is hoped that by forming a collective of these diseases as is being done overseas, it will be easier to communicate with Health authorities.

The Rare Voices Australia aims to (as taken from their literature)

  • Collaborate and connect all Australians sharing the experience of living with a rare disease.
  • Advocate for a National Rare Disease Plan
  • Raise awareness of issues faced by the rare disease community and the impact on the community
  • Educate with current information and resources to promote understanding, motivation and empowerment.

Other support groups were present at the round table discussion hosted by Megan Fookes, Director of Rare Voices Australia. It amazed Anita and Susan that the discussion and commentary on key issues experienced by individuals affected and by the organisations aiming to support those affected repeatedly and exactly expressed our feelings, frustrations, sentiments and experiences. It is felt that this body has the potential to bring invaluable assistance to the committee in the work that is being undertaken to support MG sufferers.

Great interest was shown in the work undertaken by MGAQ in regard to the MG Survey and the subsequent Economic Analysis which was undertaken.

Do have a look at the website www.rarevoices.org.au. The site gives access to information about various conditions and assists in finding groups who can be a support to people. Your Association has purchased two copies of a glossy book highlighting life with rare diseases. These are available via our library service and can be recommended. It is hoped that an MG story may be told in the second edition of this publication.