Prestigious appointment for Rare Disease researcher

May 1, 2015

Alan Bittles is Chair of the Scientific Medical Advisory Committee of Rare Voices Australia.Alan Bittles, Adjunct Professor and Research Leader in the Centre for Comparative Genomics, has been appointed inaugural Chair of the Scientific Medical Advisory Committee of Rare Voices Australia (RVA).

Collectively, rare diseases are estimated to affect 1.2m Australians and RVA is a national, not-for-profit organisation established in 2012 to provide a unified voice for all Australians living with a rare disease.

“Some 7,000 to 8,000 rare diseases have been described worldwide but as they are individually infrequent, rare diseases have often been overlooked or have remained undiagnosed,” Professor Bittles said.

“One of the initial aims of the newly established RVA Scientific Medical Advisory Committee will be to determine the prevalence and types of rare diseases that affect Australians.”

RVA interacts with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services in Australia for people affected by a rare disease.

“Information collected and analysed by the RVA Scientific Medical Advisory Committee will be vital for a current investigation by the Commonwealth Department of Health into the Life Saving Drugs Programme, which subsidises medicines for a small number of people with specific rare diseases,” Professor Bittles said.

RVA has just signed a Memorandum of Understanding with its European Union Framework 7 Programme that connects registries, biobanks and clinical bioinformatics for rare disease research.

Professor Bittles said that collaboration between the two bodies will be invaluable in assisting people with rare diseases in both regions and worldwide.

Print This Post Print This Post

Leave a comment

You can use these tags : <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

We read every comment and will make every effort to approve each new comment within one working day. To ensure speedy posting, please keep your comments relevant to the topic of discussion, free of inappropriate language and in-line with the editorial integrity of this newsroom. If not, your comments may not be published.

Thanks for commenting!