If you ask her parents, Trisha Sawhney is like any typical 12-year-old girl in so many ways.
“Trisha is a happy-go-lucky child. She has lots of hobbies. She loves TikTok, singing and dancing,” her father Neeraj Sawhney, from Melbourne, says.
“She also loves cooking and baking and wants to start her own YouTube channel to upload her dance and cooking videos.”
RVA’s CEO, Nicole Millis, was interviewed by 9News.com.au.
Click here to read the full article.
Rare Voices Australia (RVA) Scientific and Medical Advisory Committee members, Kaustuv Bhattacharya, Yvonne Zurynski and Adam Jaffe, have written an article for the Journal of Paediatrics and Child Health, alongside RVA’s CEO, Nicole Millis.
The article is titled, Rare diseases research and policy in Australia: On the journey to equitable care. Click here to download the article or here to access the online link.
Senator the Hon. Linda Reynolds CSC, Minister for the National Disability Insurance Scheme (NDIS), has placed compulsory NDIS assessments on pause.
Rare Voices Australia (RVA) welcomes this initial move and will continue monitoring this situation.
As stated in our Submission to the Joint Standing Committee on the NDIS Parliamentary Inquiry into Independent Assessments, RVA does not support the use of independent assessments for rare disease candidates. Based on the lived experiences of families impacted by rare diseases, RVA believes that independent assessments will further embed the inequity and inconsistency that many people living with a rare disease and their families have encountered in previous dealings with the NDIS.
Read to the Parliamentary Inquiry.
Read to the National Disability Insurance Agency’s public consultation: access and eligibility policy with independent assessments.
Sustainable, secure funding remains one of the key challenges for rare disease organisations. RVA is hosting an education webinar for Rare Voices Australia (RVA) Partner organisations that is designed to assist you in considering your organisation’s approach to fundraising and how to manage funds generated.
The webinar will draw on the experiences of the rare disease community, as well as fundraising and financial professionals.
Date: Wednesday 28 April
Time: 10:30am – 2:30pm AEST
RSVP: COB Friday 23 April to: [email protected]
Note: the session is open to RVA Partner organisations only. If you are not an RVA Partner and would like to attend, click here for more information about becoming an RVA Partner.
The Bloody Long Walk with Sean Murray, CEO of RVA Partner, Mito Foundation
Sean will share his unique insights as to how Mito Foundation built this successful fundraising event, including lessons learned and important considerations regarding event-based fundraising for rare disease organisations. Sean is also a founding director of RVA Partner, Childhood Dementia Initiative.
Partnering with Industry with Nicole Millis, CEO, RVA
Nicole will share RVA’s approach to pharmaceutical industry sponsorship, exploring the opportunities and some of the potential pitfalls, including how to manage these pitfalls.
Your Supporters are your Most Valuable Asset with Bianca Crocker, Founder and CEO, the Small Non-Profits Alliance and MD of Fish Community Solutions
Bianca will draw on her 15 years’ worth of experience in the non-profit sector as she explores why your supporter base is your most valuable asset. Bianca specialises in strategy, fundraising and communications.
Introduction to Grant Seeking and Writing with Alissa Bermingham, Strategic Grants
Strategic Grants is an industry leader in providing charities and non-profits with strategic advice around setting up effective grant-seeking strategies. This session will help your organisation to set a solid foundation for grant seeking and writing.
Financial Management and Cashflow Planning for NFPs with Wil Honner, PwC Australia
Wil is a Director in PwC’s Business Recovery Services Group and has been helping businesses with rapid profit improvement in Australia and the United Kingdom for over 20 years. Wil has a particular focus on building sustainability within not-for-profit (NFP) businesses to enable NFPs to better achieve their long-term goals.
Rare Voices Australia (RVA) attended the COVID-19 response update for carers webinar on 23 March 2021. The webinar was hosted by Professor Michael Kidd AM, Deputy Chief Medical Officer, Department of Health. Speakers included Liz Callaghan, CEO, Carers Australia; Luke Mansfield, Group Manager, Department of Social Services; and Bridget Carrick, Director, Vaccine Taskforce, Department of Health.
Below, RVA has put together a summary of the information presented during the webinar.
Under the Australian Government Carer Recognition Act 2010, a carer is someone who gives care and support to a relative or friend who:
You can read more about carers here.
Carers may be eligible to register for the COVID-19 vaccine as the Federal Government commences Phase 1b of the vaccine rollout if they care for:
Check your eligibility. Use the Government’s Vaccine Eligibility Tracker tool.
You can also see which specific underlying medical conditions are included as part of Phase 1b, via this document (go to page 10).
If you are eligible to receive the vaccination as part of Phase 1b, book your appointment via the Vaccine Eligibility Tracker.
If you are unable to find a location that is administering the COVID-19 vaccine close enough to your location, check the Tracker again in a few weeks as more locations will be added shortly.
Note that eligible carers will be required to provide carer documentation or alternatively, to complete an Eligibility Declaration Form and take it with them when getting the vaccine.
In terms of carer documentation, each state and territory will differ in terms of what is considered adequate documentation. Reach out to Carer Gateway if you need assistance with this.
Carer Gateway is available to assist carers. Reach out to them on 1800 422 737 for assistance with your unique situation.
Yes, your records will be stored in the Australian Immunisation Register (AIR), which you can access at any time via the myGov website. Clinical records will also be stored.
Call Healthdirect Australia: 1800 022 222
The Department of Health has translated a number of COVID-19 information resources that are available on their website.
In Western Australia, hundreds of peer support groups and other Non Governmental Organisations (NGOs) provide crucial support for those living with rare, genetic, and undiagnosed conditions. During the COVID-19 pandemic, this cohort/sector has been recognised by the State Government as being amongst the most vulnerable in the community.
As such, the WA Department of Health (Office of Population Health Genomics) has engaged ConnectGroups to develop a 25-30 minute online survey. Click here to view the flyer.
Who is eligible to complete the survey?
Leaders of any peer support group or NGO that supports Western Australians living with a rare, genetic or undiagnosed condition.
WA Department of Health’s goal in commissioning this survey:
To foster the long-term sustainability of these groups by identifying and addressing current gaps in service delivery.
Who is conducting the survey:
ConnectGroups is the peak body for peer support in WA, and is the voice of over 690 groups across the state for mental health, chronic and genetic conditions, social isolation and other life adversities. Click here to learn more about ConnectGroups.
ConnectGroups is looking to hear directly from rare disease NGOs and peer support groups who have members in WA and can provide valuable insights into the ongoing training, funding and support that is needed in this sector. To achieve the intended outcomes, we invite leaders to complete this 25-30 minute survey by 23 March 2021.
The survey covers the following areas:
1. How your support group/organisation operates.
2. What services your support group/organisation provides.
3. What assistance your support group/organisation requires to continue to deliver these services.
All questions require a response for the survey to be submitted. ConnectGroups encourages respondents to make use of the ‘N/A’, ‘I don’t know’, and ‘Other’ options if they are unable to respond. For questions that require a number to be entered, please enter ‘000’ if you do not want to respond.
ConnectGroups would like to thank you for participating in this sector consultation. Your response will be highly valuable in providing a clear and complete image of the NGO sector in WA and of the way forward.
If you have any questions about the survey or if you’d like to undertake a phone survey, contact ConnectGroups by phone: 08 9364 6909.
A big thank you to everyone who played a role in helping to generate awareness for 2021 Rare Disease Day. Below, we have included a summary of media generated that RVA was involved in securing and/or were featured in.
Sunday Extra – ABC Radio National | Radio
Aired on Sunday (28 February) morning, this segment featured clinical geneticist, Dr Lisa Ewans who is a member of RVA’s Scientific & Medical Advisory Committee, as well as Sean Murray, the CEO and a founding director of RVA Partner, Mito Foundation, and Christine Lowe, President of RVA Partner, Myositis Association of Australia Inc.
Listen to the Sunday Extra segment on the ABC Listen app or your favourite podcast app. We’ve listed the Apple Podcasts and Google Podcasts links below.
Apple Podcasts (go to the 2hrs 33 min mark)
(go to the 2hrs 33 min mark)
SBS news | TV and online
Aired on Sunday (28 February), this story featured Monty, an eight-year-old boy living with pontocerebellar hypoplasia. The story also included commentary from RVA’s CEO, Nicole Millis.
You can watch the TV segment that aired on SBS On Demand (available until 7 March). Go to the 29th minute mark on to watch the story.
An online article accompanied the TV story.
2GB (NSW) | Radio
Nicole Millis was interviewed about whole-genome sequencing in a package that aired on Sunday (28 February). Click here to listen to the clip.
This interview was syndicated across 4BC, 2CC, 5AA and 4BC.
Newscorp | Online
This story ran online on 26 February and was widely syndicated across four states. The reporter explores the story of families from three RVA Partner organisations: SCN2A Australia, Rare Find Foundation and ausEE Inc. The article also features Angelina and her family’s story – Angelina was part of the global Rare Disease Day campaign. Nicole Millis provides commentary. Click here to read the article.
The Advocate | Online
Three articles ran in The Advocate ahead of Rare Disease Day:
Damian’s story – Damian is a member of RVA Partner, Myositis Association of Australia Inc.
Angelina’s story – Angelina was part of the global Rare Disease Day campaign.
Tim’s story – Between 12 August 2020 and 28 February 2021 (Rare Disease Day), Tim ran 100km in 200 days to raise awareness for rare diseases. All funds raised were donated to RVA.
Source Kids Magazine | Online
A story will run in Source Kids’ Autumn issue, featuring commentary from Nicole Millis. We will share the article as soon as it’s available.
Victoria has entered into a five day lockdown due to a COVID-19 cluster that continues to grow from hotel quarantine. Click here to read more.
Rare Disease Day will be marked on Sunday 28 February. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives.
A number of landmarks around Australia will be illuminated to mark Rare Disease Day (click here to see the full list).
Rare Voices Australia (RVA) has put together a Media Pack for any media activity you or your organisation would like to engage in ahead of Rare Disease Day.
Click here to access the media release template [Word].
Click here to download a one-pager with more information about rare diseases, Rare Disease Day and RVA [PDF].
You can also direct any media looking for more information about rare diseases here. All Rare Disease Day assets can be downloaded from the official Rare Disease Day website.
RVA Partners that would like assistance with any planned media activities are encouraged to reach out to RVA directly: [email protected]
Effective from 6pm Sunday, 31 January 2021 until 6pm Friday, 5 February 2021, the Perth metropolitan area and the Peel and South West regions will enter a 5-day lockdown, based on health advice.
See the WA Government’s COVID-19 page for more information.
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