Rare Voices Australia: May 2019 e-news
View this email in your browser


Eva's Story 

Told by her mother Ursula, Eva's story highlights the importance of Diagnosis and connecting with others in the rare disease space. Read more.

A Word from our Chief Executive Officer

Hi everyone,

Rare Voices Australia (RVA) congratulates the many Parliamentarian champions of rare disease and RVA who have retained their seats following the Federal election. We welcome the recent announcement that Greg Hunt MP is continuing as Minister for Health. Last November, Minister Hunt announced the development of the National Strategic Action Plan for Rare Diseases to be led by RVA. We look forward to our continued work with Minister Hunt for the best outcomes for Australians living with rare disease.

While the Action Plan has been a key focus of our work this year, this month, I also wanted to highlight our recent Education workshops. RVA ran 3 sessions on ‘Community Engagement’ for RVA Partner organisation leaders in Sydney, Perth and Brisbane. Every two years (alternating with the Summit), RVA runs a series of education sessions in various states that focuses on advocacy. The workshops are a way for RVA to help build the advocacy capacity of patient organisations individually, but also as a sector. They also provide valuable networking opportunities. 

Strong community engagement is critical for advocacy of patient organisations and of the broader rare disease sector. Patient organisation leaders have critical roles in liaising with Government, clinicians, researchers and industry. It is vital that they have the skills and knowledge to represent their diverse communities. Passion and personal knowledge of a rare disease is important but there is so much more to it. If you are an individual or parent of someone living with a rare disease, ask yourself: are you confident that your patient group leaders know about you? Do they represent your views and experience to Government and other stakeholders effectively? Not sure? Consider reaching out to your patient organisation to help shape and guide its development. As for patient organisation leaders: how well do you know your community? How can you continuously build on your community engagement? If you don’t engage well enough with your community how can you advocate for people? It is in the interest of all stakeholders including clinicians, researchers and industry to encourage a greater level of community engagement from and with the patient organisations.

Workshop participants particularly valued the strategies on stakeholder engagement, open and effective communication, and the emphasis on patient groups to be as inclusive as possible for the communities. One participant commented that the workshop enabled “education for different rare disease groups, not just from RVA but within the groups themselves (networking and support).” I congratulate the RVA Partners who prioritise community engagement by participanting in these workshops.

For more information about Community Engagement or RVA’s Education Program in general, please contact RVA. We are currently planning a webinar education series later this year. 

Until next time,

Nicole Millis
Chief Executive Officer
Rare Voices Australia

Establishment of Precision Health Council in WA

In late April, WA's Health Minister, Roger Cook, announced the establishment of a new Ministerial Council to advise the State Government on opportunities to further develop and support precision health advances in WA. Precision health is a rapidly evolving field that uses new and emerging technologies to improve patient outcomes. The Precision Health Council will be chaired by South Metropolitan MLC, Kate Doust. RVA congratulates Kane Blackman, Deputy Chair of the RVA Board on his appointment to the Council, as well as Professor Gareth Baynam who is a member of RVA's Scientific & Medical Advisory Committee. Click here to read more.


Kuvan® listed on PBS

We congratulate RVA Partner, Metabolic Dietary Disorders Association (MDDA), on its effective advocacy towards the PBS listing of Kuvan® for the treatment of the metabolic condition, PKU. While access to Kuvan® is only available via the PBS to children at this stage, this is a positive first step and MDDA continues to advocate for access to treatment for adults. RVA provided advocacy support to MDDA, who did an amazing job in ensuring the voice of their community was heard by all decision-makers throughout the process. RVA congratulates Greg Hunt MP and the Government for this decision. Click here to watch the news segment that ran on Channel 10.

EURORDIS releases new position statement

At its recent Membership Meeting 2019, EURORDIS and its over 800 member organisations, launched a new position statement, which calls for the provision of holistic care for the 30 million Europeans living with a rare disease and their families by 2030. The strategy to ensure holistic and integrated care for rare diseases is structured around three key pillars, which are explored in detail in the position statement:

Pillar 1 - Quality and adequate social services and policies
Pillar 2 - Integrated care: bridging health and social care
Pillar 3 - Equity of rights and opportunities.

Click here to read the full position statement.

RVA farewells staff member, Amy Mills

The team at RVA is very sad to farewell Amy Mills who has been with RVA for over 5 years and since its very beginnings. Amy has been involved in a number of different roles in RVA over the years - from designing the Fair For Rare logo, to becoming the youngest member to join the RVA Board in the past, to playing a vital role in putting together both of our National Rare Disease Summits to date and most recently, as our Social Media Officer. We thank Amy for her incredible contribution to RVA and wish her all the best! 

2019 NPC Scientific Research Symposium

RVA Partner, Australian NPC Disease Foundation Inc, is hosting its 2019 NPC Scientific Research Symposium on 19 July, 2019 at the Florey Institute in Victoria. This symposium will feature the latest clinical and research updates from Australian and international clinicians and researchers. Professor Marc Patterson (Mayo Clinic, USA) will be welcomed as the keynote speaker. Click here to view the event flyer and here to learn more and to register.

Prader-Willi Syndrome Association of Victoria's #15for15 Challenge

Prader-Willi Syndrome (PWS) is a complex genetic disorder that affects genes on the 15th chromosome… but 1 in 15,000 children have it so it’s much more common than people often think. The PWS #15for15 Challenge asks people to commit to a challenge for 15 days in a row during May (17th to 31st inclusive) and raise funds for, and awareness of, the PWS cause. You can donate to RVA Partner, PWSA Vic’s #15for15 Challenge, via this link.

Brisbane conference highlighting a rare disease
How often is a conference totally dedicated to a rare disease held? The Myasthenia Gravis Conference will be held by RVA Partner, Myasthenia Alliance Australia (MAA), on 3 August this year at the Princess Alexandra Hospital in Brisbane. This is an opportunity for people with various forms of myasthenia, carers, families and interested individuals to hear world-renowned neurologists speak, form networks, make new friends and share stories. New, up-to-date information presented by the neurologists can only be heard by attending the conference – it cannot yet be found on social media. Advice and answers to any questions you may have are available from the MAA chairperson, Susan, on freecall 1800 802 568. Read more at RVA is also very pleased to be speaking at this conference.
Invitation to participate in My Health Record awareness 
and education project
The opt out period for My Health Record has now ended. For the Australians who now have a record, the next challenge is to get people to use it and to take control of their record. The Consumers Health Forum of Australia (CHF) is working with the Australian Digital Health Agency to co-develop, disseminate and gain feedback on a My Health Record awareness and education program for people living with chronic health conditions and their carers. The project will help develop an information/education pack (toolkit) aimed at giving relevant information to people with chronic conditions. The toolkit will also include information for older Australians and those with lower digital access/ability. CHF is looking for 8 to 10 consumers to contribute - those interested are invited to submit an EOI by COB Monday 3 June. To learn more about what’s involved and to express your interest, click here.
RVA partner news and how to become a partner
RVA partner organisations: don't forget you can send us your social media information online now so that RVA can cross-promote your organisation and its activities. Not an RVA partner yet? Joining is easy - as a small not-for-profit organisation, we rely on the support of our RVA partners to continue doing the work that we do. The more funds we have, the more we can do to fight for a fair go for those living with a rare disease. Individuals and organisations can sign-up to become an RVA partner here. In addition to advocacy, mentorship and education, RVA offers a number of other benefits to RVA partners including social media promotion, entry into our closed Facebook group which allows patient organisation leaders to share strategies and so on, rare disease policy support and more. For more information, please reach out to Sarah, our Stakeholder Engagement and Communications Officer via email to organise a phone call. Alternatively, become an RVA partner today.

Upcoming events

If your organisation has an event coming up and would like it advertised in our newsletter, please email with the details. 

Submit to RVA's June 2019 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: 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 June 2019 edition of RVA News is 8th June 2019.

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.
Become a Partner
Make a Tax Deductible Donation