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Rare Voices Australia: April 2018 e-news
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RVA PERSONAL STORY

Caleb's  Story 

Meet Caleb, whose story highlights how pivotal access to ongoing treatment and services for rare disease patients is. His story highlights how important investment into research is to pave the way for medical breakthroughs that have the power to change lives. Read more.

A Word from our Executive Officer

Hello all,

With Easter and the school holidays, I was lucky to enjoy some quality time with my family this month. With a 2-year-old, 6-year-old and a teenager who’s in the final year of school, things can be pretty hectic at home. I hope everyone was also able to take a much needed break. Thank you to RVA staff, Anne, Sarah and Amy for continuing the work of RVA while I was on leave.

Just before Easter, I represented RVA at Research Australia’s Pre-Election Summit. We’ve included more information about the event below. RVA very much values its membership with Research Australia and appreciates their recognition of RVA as a research peak body. The Government has also recognised RVA as a peak body with its invitation to the upcoming 2018-2019 Federal Health Portfolio Budget Briefing on May 8. RVA will provide its response to this Budget announcement in next month’s e-news.

The recommendations from the March Pharmaceutical Benefits Advisory Committee (PBAC) meeting were recently published. Congratulations to the Spinal Muscular Atrophy community, led by Julie Cini, for the positive recommendation for nusinersen (spinraza) for SMA Type 1, 2 and 3a. RVA is proud of the advocacy work done by our RVA partner organisation, Spinal Muscular Atrophy Australia. While there was a mix of outcomes for rare disease drugs in this round of PBAC decisions, it is increasingly clear that effective and persistent patient advocacy is crucial to positive outcomes in rare disease. It is positive to see that PBAC is increasingly acknowledging the importance of the patient voice and has demonstrated a willingness to work with patient organisations in an effort to better respond to the challenges of rare disease.

Speaking of patient advocacy, RVA is a proud participant in the National Patient Organisation Standing Committee, which includes representation from Hearts4Hearts, Lymphoma Australia, Multiple Sclerosis Australia, Muscular Dystrophy WA, Save Our Sons Duchenne Foundation, Spinal Muscular Atrophy Australia and Unicorn Foundation. I thank the Centre for Community-Driven Research for their authentic leadership. This Committee recently met with Health Minister Greg Hunt to discuss the important role of patient organisations in the health system. Such collaboration is important and a key driver of change.

On the topic of change, RVA has had the opportunity to revitalise the Fair For Rare campaign. There is still a bit more work to be done but I would like to take this opportunity to sincerely thank the many people, members of the rare disease community, who have so generously shared their stories and added their voices to the call for Fair For Rare. This is never easy and we at RVA very much appreciate your support.

I am very excited to inform you all that RVA will be holding our biennial National Rare Disease Summit later this year. While numbers are limited, representatives from each of the stakeholder groups will be invited. More details are coming soon, but I can announce that it will be held in Melbourne on 16 and 17 November 2018. Stay tuned for more details.

Lastly, there is a call for donations below. RVA has done some really important work but without Government funding, we are reliant on project funding, RVA Partner (membership) fees and donations. Please consider donating however much you can afford to RVA and help us to get more much-needed work done!

Until next month,


Nicole Millis
Executive Officer
Rare Voices Australia

www.rarevoices.org.au

Research Australia Pre-Election Summit
Late last month, our Executive Officer was pleased to actively participate in Research Australia’s Pre-Election Summit, which was held at Old Parliament House in Canberra. The event brought together key representative organisations from across the health and medical research space to identify key issues approaching the next Federal election. It was great to see presentations and messages from Greg Hunt (Federal Minister for Health), Catherine King (Shadow Minister for Health) and Richard Di Natale (leader of the Australian Greens). RVA was heartened to hear Senator Di Natale state the Greens’ support for a National Rare Disease Framework.
 
The countdown to the EOFY is on!
We're proud of RVA's recent advocacy wins but there is still more to be done! Click here to view our wins over the last 12 months and to see what's on our to-do list for the immediate future. If you haven't already, please share the infographic to help spread the word about rare disease within your networks and community.

As we head into the End of Financial Year (June 30), now's a great time to give what you can as all donations to RVA are tax deductible. Each of your contributions, regardless of how big or small, help you to reduce or save on your tax at the end of the financial year. Donate today!
FaceMatch website launches
RVA is pleased to share the launch of FaceMatch with the rare disease community. While the cause of intellectual disability (ID) is mostly genetic, up to 70% of people with ID haven’t received a diagnosis despite having had genetic testing. Many people with ID have facial features that can provide clues to diagnosis. FaceMatch uses Imagus computer face-matching technology to match the faces of people with undiagnosed moderate to severe ID. It is the first research project of its kind to use computer technology to match the faces of individuals who remain undiagnosed following genetic testing. Chances of finding a match will increase as more people participate in the project. This international platform offers dual parent/doctor participation and involvement can be initiated by a parent or a doctor. Parents are asked to nominate a doctor to allow the FaceMatch team to work with the parents and their doctors. This unique parent focused model enables parents to develop, edit and update their child's profile page. Parents of children with known genetic diagnoses are also invited to participate. Visit facematch.org.au for more information about the project including privacy, security and confidentiality.
Faster DNA tests to save lives of Victoria's sickest kids
RVA welcomes the Andrews Labor Government announcement that will see Victoria’s sickest babies and children getting the tests and diagnosis they need up to 10 times faster. Announced late last month, this is made possible thanks to an Australian first rapid DNA sequencing program. The announcement follows a ground-breaking study into genomic sequences that involved 40 kids with a rare or undiagnosed condition. RVA continues to call for improved research efforts and coordination in the field of rare disease.

Read more about the Andrews Labor Government’s announcement here.

Upcoming events



If your organisation has an event coming up and would like it advertised in our Partner News, please email communications@rarevoices.com.au with the details. 

Submit to RVA May edition of e-News

RVA encourages partner 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 enews, please submit it to: communications@rarevoices.com.au. Please send a website link (preferable) or short paragraph with details such as: the title of event, date, cost, venue, details/contacts. The deadline for submissions for the May 2018 edition of RVA News is 7th May 2018.

Support Rare Voices Australia

Rare Voices Australia is a small but vibrant non-profit organisation that relies on the support of organisation partners and the community to be the unified voice of all Australians living with a rare disease. RVA's online partnership area enables individuals and organisations to join our cause. Click here for more details.
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Rare Voices Australia · PO Box 138 · MENTONE, VIC 3194 · Australia