RVA eNews April 2017

Rare Voices Australia: April 2017 e-News

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Stephen’s Story 

Meet Stephen.  His ‘Fair For Rare’ story highlights the challenge of obtaining affordable treatment in Australia.  This has caused Stephen worry about the future. Living with a rare disease there is often not an available treatment or cure and if one does exist, the treatment is often out of financial reach to most Australians, and there is no certainty the Government will fund them. Read more

A Word from our Executive Officer

It was wonderful to see the Member for Cunningham, Sharon Bird MP, talk about rare disease and RVA in Parliament recently. What was so exciting for RVA was that it was not initiated by us. One of Sharon Bird’s constituents, Melissa Bowyer whose son has a rare disease, met with her MP and talked to her about her family’s experience and the ‘Fair for Rare’ campaign. Great work Melissa! It is a reminder of how much political influence everyone has. It is so important to introduce yourself, your family to your local MP. In fact, if you request a meeting, your MP is obliged to meet with you.

By reaching out to her MP and sharing her family’s story, Melissa set the ball rolling. A Labor MP, Ms Bird obviously consulted with Catherine King’s office (Opposition Health Minister). RVA has a strong working relationship with Catherine King MP and … a long story short, Sharon Bird MP raised many issues of rare disease in Parliament – Melissa’s family’s experience, Fair For Rare, RVA, Life Saving Drug Program Review etc. Thank you, Melissa for your pivotal role in this. It is a perfect example of how politics works and more importantly how we can all work together to influence ‘Fair for Rare’.  For more information on how you can engage your MP go to the Fair for Rare website or contact the RVA office. As Melissa shows, it does make a difference.

RVA provided a submission into the Senate Inquiry into Funding for Research into Cancers with Low Survival Rates. Supportive of the inquiry, RVA however called for the need for such responses to be guided by a focus on equity and as part of a broader and much needed prioritisation on rare disease.

RVA will continue to focus its efforts at a policy and systemic level. We know that effective rare disease policy absolutely transforms patients’ lives. You can support the important work of RVA (a non-profit organisation) by becoming a financial member, giving a donation, and by engaging in the Fair for Rare campaign.

Until next month,

Nicole Millis
Executive Officer
Rare Voices Australia

National Health Genomics Policy Framework

RVA was pleased to recently participate in a targeted consumer roundtable consultation with the Department of Health looking at the National Health Genomics Policy Framework. The Framework is a commitment between the Commonwealth and state and territories to work collaboratively to integrate genomics into the health system over time. Like many organisations, RVA provided a formal submission into the Framework last month. We appreciated the opportunity to further emphasise our key messages, including the vital need for the Framework to be clearly patient-centred, and respond to patient-need, rather than just technology-driven. RVA looks forward to further dialogue with the Department on this and will call for and support increased consumer engagement in the process.

Multi-stakeholder TGA Workshop 

RVA also participated in a multi-stakeholder TGA workshop looking at the Provisional approval of prescription medicines. RVA supports TGA proposed expedited process, however the TGA is just one part of the process of access to treatments in rare disease. A clear and timely reimbursement process is also needed to ensure timely and equitable access to treatments and improve patient outcomes in rare disease. RVA will provide a submission to this TGA Consultation that closes 1 May. The TGA website has more information.

Media Story – Sharon Bird MP – Speech in Parliament

Well done and thank you to Sharon Bird, Member for Cunningham for advocating so effectively for her constituents as well as all the Australians living with a rare disease. Thank you for promoting Rare Voices Australia and our call for Fair for Rare.

To watch the video Press Here

Standing Committee Call for EOI 

Centre for Community-Driven Research (CCDR) is convening a patient organisation Standing Committee to create a place to share information about what has worked/not worked in relation to advocacy and policy-related initiatives, and provide advice to decision-makers in the context of health policy. EOIs close on 26 May 2017. Jo Watson (Consumers Health Forum and Consumer Representative, PBAC), Simone Leydon (CEO, Unicorn Foundation) and Cath Holliday (CEO, CCDR) will form a review committee to ensure a balanced mix of representation from small and large organisation across a range of conditions and illnesses. For more information or to register your organisation’s EOI go to the Community Portal

Research Grants for Rare Diseases Available from National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the availability of seven new research grants to study rare diseases. All U.S. and international researchers are encouraged to apply by the initial application deadline of June 23, 2017. Read more

Rare Disease Day Brisbane High Tea

RVA would like to say a big thank you to all those involved in the RDD Brisbane High Tea, which raised funds for RVA, as well as raising awareness around rare diseases.  The funds came from tickcet sales, raffle ticket sales and sales of “rare bears”.  

A special thank you to Jacqui Kirkman and Lara Boniface who organised this event, with the assistance of Lea Gamble and Leisa Whybird. The Qld Show Choir also supported this event, with corporate and government sponsors and generous individuals including: 
Professor Ranjeny Thomas           Lovely Beauty Lounge
Curves Carina                                Donna Dyson
Alison Findlay                                 Di Farmer, MLA
Joe Kelly, MLA                                Terri Butler, MP

RVA Patient Organisation Member News

If your organisaton has an event coming up and would like it advertised in the Member News, please email [email protected] with the details.  For the upcoming events Press here

Submit to RVA May Edition of E-news

RVA encourages member organisations and individuals to consider making a submission to a future RVA e-Newsletter. If you have a rare disease meeting, event or announcement to share via RVA E News, please submit to [email protected] Please send a short paragraph with details such as; the title of event, date, cost, venue, details/ contacts. Submissions for May 2017 edition of RVA News is 7th May 2017.


Rare Voices Australia is a small but vibrant non-profit organisation that relies on the support of organisation partners and community to be the unified voice of ALL Australians living with a rare disease. RVA has launched an online Membership capability that enables individuals and organisations to join our cause. Click here for more details.

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