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- ABC Nightlife Rare Diseases Segment
Chair of Rare Voices Australia’s (RVA) Scientific and Medical Advisory Committee, Professor Adam Jaffé, and Heather Renton, Chief Executive Officer of RVA Partner, Syndromes Without a Name (SWAN) Australia, featured in ABC Nightlife’s rare diseases segment on 31 May 2021. Click here to listen to the show. - Young Australians living with rare diseases defy the odds but need better support, expert saysYoung Australians living with rare diseases can face significant social, employment and educational barriers in life. Many can also experience isolation and exclusion from their peer groups. But Basit Bahram is trying his best to overcome these challenges. RVA’s CEO was interviewed by ABC News. Click here to read the full article.
- Parents of first Aussie child diagnosed with rare disease to crowdsource clinical trialIf 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… Read more: Parents of first Aussie child diagnosed with rare disease to crowdsource clinical trial
- RVA’s Rare Disease Day Media SummaryA 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… Read more: RVA’s Rare Disease Day Media Summary
- Hope on the HorizonImagine your child is showing symptoms that confound doctors. You see expert after expert, getting test after test. Perhaps you’re even scoffed at along the way, however, you persevere because your instincts as a parent are screaming at you that something is not right with your child and you know early interventions produce the best… Read more: Hope on the Horizon
- Amplifying the Patient Voice in Rare Disease AccessRare disease patients are organising like never before, turning up the publicity volume and becoming ever more active in driving cures in the lab and even the boardroom. As a person living with a rare disease and a professional in healthcare communications, I occasionally have moments of disconnect. Such as when I began this article. … Read more: Amplifying the Patient Voice in Rare Disease Access
- SourceKids: COVID-19 EditionRare Voices Australia’s CEO, Nicole Millis, was interviewed for SourceKids’ special COVID-19 edition. Click here to read the article on pages 24 and 25.
- Protecting the Rare During a Rare PandemicCarol Wicking, Gareth Baynam, Kaustuv Bhattacharya (all members of Rare Voices Australia’s Scientific and Medical Advisory Committee) and Nicole Millis wrote this Letter to the Editor that was published in The Medical Journal of Australia.
- New Plan for Grappling with Rare DiseasesWhen Kane Blackman’s son started experiencing severe symptoms of an unknown condition, he was told his child was delayed and would eventually catch up. It was then suggested his son probably had cerebral palsy. Finally, he was diagnosed with Angelman Syndrome, a rare genetic disease affecting one in 15,000 Australians. It prevents speech, causes seizures,… Read more: New Plan for Grappling with Rare Diseases
- Rare Disease Day 2020: Far North Queensland Fun RunRare Voices Australia (RVA) attended the Far North Queensland Fun Run in the lead-up to Rare Disease Day 2020 and were interviewed by Channel 7. Click here to watch the segment.
- Outrage Over Brothers’ NDIS PaymentsClick here to read media generated following the research of the Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases report.
- Are Rare Diseases Being Overlooked by the NDIS?Rare Voices Australia’s (RVA) CEO, Nicole Millis, was interviewed by Claire Lindsay on ABC’s AM radio show. Click here to listen to the interview.
- Rare Voices Australia: Working to Make it Fair for RareThe burden of rare disease remains unacceptably high according to one national organisation fighting for the rights of nearly 2 million Australians in this category. Rare Voices Australia CEO Nicole Millis explains the progress being made towards addressing the inequality in the health system – effectively making it ‘Fair for Rare’. Click here to read… Read more: Rare Voices Australia: Working to Make it Fair for Rare
- ‘Orphan’ Rare Diseases Focus of New Federal Government Support PlanThe federal government will establish Australia’s first National Rare Diseases Framework and Action Plan to support people with rare conditions such as Batten disease, muscular dystrophy and mitochondrial disease. Advocacy group Rare Voices Australia (RVA) will receive $170,000 to develop the action plan, Health Minister Greg Hunt will announce at the 2018 Rare Diseases Summit… Read more: ‘Orphan’ Rare Diseases Focus of New Federal Government Support Plan
- Morrison Government announces support of National Rare Disease Framework
Rare Voices Australia (RVA), the national peak not-for-profit organisation advocating for the nearly 2 million Australians living with rare disease, welcomes the Morrison Government’s support of a National Rare Disease Framework. The Hon. Greg Hunt MP, Minister for Health, made the announcement today as part of the official opening of RVA’s biennial 2018 National Rare… Read more: Morrison Government announces support of National Rare Disease Framework - Life Saving Drugs Program ReformRVA is pleased to welcome the Turnbull Government’s announcement that ended the long-standing uncertainty regarding the Review of the Life Saving Drugs Program (LSDP). We commend the Government’s commitment to retain and improve the LSDP, drawing upon the recommendations of the Review. To read the Wilson Review Report, the Government’s response to the Report and… Read more: Life Saving Drugs Program Reform
- Medical Research Future Fund (MRFF) UpdateRVA was in Sydney recently for the announcement of the successful recipients of the recent Medical Research Future Fund (MRFF) round targeting rare cancers and rare diseases. The Government awarded $26m in funding, double the $13m originally announced. This is an important investment into research for a number of rare diseases and cancers including Huntington’s… Read more: Medical Research Future Fund (MRFF) Update
- This Little Boy Can Finally be a ‘Typical Boy’ Thanks to This DrugLittle Beau Cosgrove was born with the Morquio A illness which affects every part of his body except his brain. There are only 21 known cases of the condition in Australia. Read the full article, written by Libby-Jane Charleston via The Huffington Post Australia.
- New Answers for Kids with Inherited Kidney DiseaseA new gene behind a rare form of inherited childhood kidney disease has been identified by a global research team. Read the full article via UQ News.
- Family of Young Cowboy with Rare Condition Call for Funding of Lifesaving TreatmentBrave little Beau Cosgrove’s face lights up when he reaches for his beloved cowboy hat. Read the full article, written by Clare Sibthorpe via The Canberra Times.
- Childhood Stroke Victim Fears Medication Subsidy Cuts Leave Her at RiskSofia Belmonte was just eight years old when she had a stroke in 1978. Read the full article, written by Alison Branley via ABC Online.
- Rare Disease Articles – Australian Family PhysicianRare Voices Australia is thrilled to see the Australian Family Physician (published by The Royal Australian College of General Practitioners) focus on Rare Diseases, unexplained illness, cancer of unknown primary and advocating for patients. Falling through the cracks September 2015 Vol 44 (9) 609-688 – RVA will highlight a few here but encourage you to take… Read more: Rare Disease Articles – Australian Family Physician
- A Powerful Team: The Family Physician Advocating for Patients with a Rare DiseaseThis article outlines the challenges faced by the rare disease community, and the role of the primary care physician to advocate for answers as their patients transition through the healthcare system.
- The Forgotten Ones Photographic ExhibitionA photographic exhibition opening in Sydney next week offers a unique perspective on what it’s like to grow up with someone living with a rare disease. The Forgotten Ones is a series of portraits of young Australians who live with a sibling suffering from a rare disease. As well as raising awareness of the common… Read more: The Forgotten Ones Photographic Exhibition
- Post-Summit Media Release – Rare Disease SummitA photographic exhibition in Sydney’s Customs House, 13th-14th May, offers a unique perspective on what it’s like to grow up with someone living with a rare disease.
- Pre-Summit Media Release – Rare Disease SummitRare Voices Australia hosts a Rare Disease Summit, A National Plan for Rare Disease.
- Rare Disease Day 2015Rare Voices Australia calls for a National Plan to reduce the suffering of more than 1.2 million Australians.
- Source Kids Magazine launches its First EditionSource Kids Magazine launches it’s first edition. Read about RVA’s visit to Parliament House on Rare Disease Day.
