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Rare Voices Australia: June 2019 e-news
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RVA PERSONAL STORY

Tracy's Story 

Tracy's story highlights how rare disease can impact on people's quality of life and the importance of Australians gaining access to clinical trials within similar timeframes as comparable countries. Read more. 

A Word from our Chief Executive Officer

Hi everyone,

I hope you are all managing the cold weather! It has been pretty cold where I am in Melbourne, so I jumped at the chance to support RVA Partner, Congenital Diaphragmatic Hernia (CDH) Australia as one of their Keynote speakers at their Annual Forum in Brisbane this month. (The program referred to me as an ‘Advocacy Specialist’ – which I LOVED!) It was great being part of this Forum. Similarly, in just over a month, I will be speaking at The Myasthenia Gravis Conference, which is also in Brisbane and held by RVA Partner, Myasthenia Alliance Australia (MAA).

Whenever possible, RVA accepts speaking engagements at RVA Partner events. We see this as a valuable and effective way for RVA to support, educate and work collaboratively with RVA Partners, and the broader rare disease community. This work fits within our broader ‘Mentorship & Education’ Program that aims to build advocacy capacity of rare disease organisations. While RVA is committed to work with all rare disease stakeholders (people living with rare disease, clinicians, researchers, government and industry) our work must remain person-centred. It is paramount that the ‘person/family’ voice remains strong and influential. Since starting in 2017, our Mentorship and Education Program has expanded over time to become a core aspect of RVA’s work.  


Until next time,

Nicole Millis
Chief Executive Officer
Rare Voices Australia
www.rarevoices.org.au

Consumer focused Medicine Status Website (MSW) update

The Department of Health has advised that more time for consultation is required for the Medicine Status Website (MSW). Feedback demonstrated that consumer needs were not going to be met through the process. As such, the MSW launch is now expected to go live in October 2019 following further consultation. The aim of the new MSW is that it will be more transparent and assist consumers in better understanding both the medicine evaluation and reimbursement process.
 

Research Australia half-day conference recap

RVA’s CEO, Nicole Millis, attended Research Australia’s half-day conference in Melbourne on 30 May: Stronger Together - Innovative collaboration for funding success in health and medical research (click here to view the Agenda). At the event, Research Australia spoke to their report, “Non-Government Funding for Victorian Health and Medical Research.” As a Research Australia member, RVA was pleased to attend the event and we thank Research Australia for extending their invite to RVA Partner organisations. It was fantastic to see representatives from RVA Partner organisations, Sanfilippo Children’s Foundation, Mito Foundation, SCN2A Australia, Batten Disease Support and Research Association, Immune Deficiencies Foundation Australia and Syndromes Without a Name Australia, in attendance. It was also great to hear from the Health Minister, Hon Jenny Mikakos MP who opened the event. Other speakers included the Hon Frank McGuire MP (Parliamentary Secretary for Medical Research)  as well as Megan Donnell from Sanfilippo Children’s Foundation, among others.
 

Dr Elizabeth Finkel wins 2019 medal from the Australian Society for Medical Research

RVA congratulates science journalist and author, Dr Elizabeth Finkel, who is the recipient of the 2019 medal from the Australian Society for Medical Research. It is the first time it has been awarded to a journalist. In her National Press Club Address earlier this month, Dr Finkel touches on a number of areas that are relevant to the rare disease space and RVA’s work. They include a focus on RVA Partner Sanfillipo Children’s Foundation and discussion around spinal muscular atrophy (SMA), single cell disease, Mackenzie's Mission, gene therapy, policy challenges, a lack of investment in research and more. Click here to watch this thought-provoking address and Q&A session.


 

Revestive® to be listed on the PBS in 2019

We congratulate RVA Partner, Parenteral Nutrition Down Under Inc. (PNDU), on their persistent and effective advocacy for the drug, Revestive® (teduglutide). It is now recommended to be listed on the PBS later this year. Here are a few words from PNDU's President, Karen Winterbourn: “PNDU shares the terrific news for adults living with surgical Short Bowel Syndrome-Intestinal Failure (SBS-IF) requiring Home Parenteral Nutrition (HPN):  Revestive® (teduglutide) has been recommended for listing on the PBS (http://www.pbs.gov.au/industry/listing/elements/pbac-meetings/pbac-outcomes/2019-03/positive-recommendations-03-2019.pdf). The PBS listing is predicted to take place by the end of 2019. PNDU supports equitable access to treatments for all members, and is thrilled with this positive PBAC recommendation. Being a rare condition, the PBAC has thanked PNDU for clearly expressing the significant impact of HPN on adult consumers with SBS-IF, their carers, families and friends."  
 
 

Australian Sickle Cell Advocacy organisation launch

RVA was pleased to join RVA Partner, Australian Sickle Cell Advocacy, for their official launch earlier this week on World Sickle Day at the Royal Children’s Hospital in Melbourne. We congratulate Agnes and her team for organising a fantastic event, which was attended by various stakeholders including Maria Vamvakinou MP for Calwell. Events such as these highlight the importance of relationship building and networking within the rare disease sector and with local MPs and other champions of rare disease. Click here to view images from the launch.
 

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.

Calling all 'rare' families living in Far North Queensland 

Are you part of a ‘rare’ family living in Far North Queensland (FNQ)? If you are based in FNQ and are looking to be part of a local community, you are invited to join this Facebook group dedicated to FNQ families. It is run by Meagan Cross, Chairperson of RVA Partner, FAST Australia. The group organises a number of events specifically for families in FNQ, including an annual fun run.
 

Strengthening the Support Sector - Genetic Support Network of Victoria

RVA Partner, Genetic Support Network of Victoria (GSNV), is hosting its Strengthening the Support Sector event on 30 August from 9:30am to 4:30pm at The Royal Children's Hospital, Melbourne, Vic. In 2018, GSNV hosted a very successful inaugural Strengthening the Support Sector Workshop. This workshop developed a work program for the GSNV informing their work in 2019. The purpose of this event is to engage with the Victorian Support Sector to establish future advocacy priorities and continue the next level of discussion around what a collaborative sector can deliver for people with genetic conditions and those who support them. Click here to learn more and to register. 
 

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 www.mgaq.org.au. RVA is also very pleased to be speaking at this conference.
 
 
Transition to adulthood project - Queensland University of Technology (QUT)
Do you live in Queensland and support a young person (aged 18-25) living with severe intellectual disabilities? Want to share your experiences about the legal and administrative process of becoming an adult with researchers at QUT?  Michelle King has a daughter (now aged 20) who lives with profound and multiple disabilities. She is currently conducting research for her PhD on how young people become adults in Australia’s legal and administrative system. Michelle is looking to speak with people about their experiences with legal and administrative decision making with and for young people living with severe intellectual disabilities as they become adults in Queensland. Click here to find out more about being interviewed as part of the project.
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 communications@rarevoices.com.au with the details. 

Submit to RVA's July 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: communications@rarevoices.com.au. 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 July 2019 edition of RVA News is 8th July 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.
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