22 March lunch briefing on the response to rare diseases in Australia


All too frequently, a family in Australia is confronted with the news that a child has been diagnosed with a rare disease, a condition that is severe, chronic, regularly degenerative and life threatening, and for which there is often no cure. The family quickly discovers that there is little support available: even if there is medical assistance, there is virtually no help financially, nor is there a social network on which to call. No one in their community has ever heard of the disease their child is suffering from; they are isolated and alone.

It is my pleasure to invite you to a lunch on 22nd March in the Senate Alcove, 12.00pm – 1.50pm, to celebrate a milestone of which to be very proud: the Foundation’s 500th grant to a family impacted by a rare disease. This event is proudly supported by Genzyme, a company undertaking important research work in this space. During the lunch, there will be briefings about the work undertaken by SMILE, insights from a medical specialist, and from a family impacted by a rare disease.

The SMILE Foundation is a groundbreaking national charity that was established in 2007 to improve the quality of life of children with a rare disease or condition. SMILE provides financial assistance to families of affected children, which is often the only support they receive. Additionally, the SMILE Foundation funds research relating to rare childhood medical conditions. SMILE is also committed to raising awareness of rare childhood diseases, an area which in the past has often been sadly overlooked.

One in every ten Australians is affected by a rare disease: today, there are over 2 million people including 400,000 children living with a rare, unique and often recently identified genetic condition. There will be constituents in your electorate who daily struggle with the challenges of coping with and caring for people who suffer from rare diseases.

Your participation in this event will help to significantly raise awareness of what we can all do for those living with a rare disease – we do hope you will be able to join us on this important occasion.

Eliza Newton will be in touch with your office to ascertain your availability, but please don’t hesitate to contact her in the meantime if you have any questions – (02) 8281 3252.

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