Rare Voices Australia
@rarevoices
Rare Voices Australia (RVA) is Australia’s national peak body for Australians living with a rare disease.
ID: 517037826
https://www.rarevoices.org.au/ 07-03-2012 00:23:00
4,4K Tweet
2,2K Followers
510 Following
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Alison Izzo
@ali_izzo
Editor at bodyandsoul.com.au. Bondi-living, rosé-swilling country girl at ❤
EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Andrea Hamblin
@andiehamblin
Editing, writing, producing @Telegraph. Past life: Deputy Editor, TND. Night Chief of Staff, Herald Sun. Crime reporter, News Corp.
International Pain Foundation®
@ipainofficial
International Pain Fnd (iPain) provides #ChronicPain community resources since Nov 2006 @NERVEmberProj @iPainLivingMag #MyPainIsLike #HopeIsTrue #NERVEmber
AMA President
@amapresident
Dr Danielle McMullen FRACGP Leading Australia's Doctors, Promoting Australia's Health. Follow AMA_Media on Twitter @ama_media
Murdoch Children's Research Institute (MCRI)
@mcri_for_kids
Our team is dedicated to making discoveries to prevent and treat common and rare childhood conditions. Celebrating over 35 years of discovery since 1986.
Tania Jayesuria
@tanjay81
Healthcare Communications. Avid podcast listener. Political junkie. Lover of non-fiction, #ausmusic, @sydneyswans (#Bloods) & @TheMatildas. All views are mine.
Bronwyn Terrill
@bronwynterrill
Science communicator, educator & research collaborator (#genetics/#genomics + #edutech). At Garvan & UNSW & Aus Genomics. All views are very much my own.
MND Australia
@mndaustralia
Care, advocacy and research in support of those living with motor neurone disease (MND).
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Inclusion Australia
@inclusionoz
We are the national representative organisation of people with an intellectual disability and their families - committed to the vision of inclusion!
Save Our Sons Duchenne Foundation
@saveoursons
Save Our Sons Duchenne Foundation is the peak body for Duchenne muscular dystrophy in Australia to give hope and change lives.
Rob Mitchell
@robmitchellmp
Federal Labor Member for McEwen All content authorised by Rob Mitchell MP Australian Labor Party Canberra
Norman Swan
@normanswan
Co-host of RN’s Health Report and What’s That Rash & reporter on ABC TV’s 730. You can order my book on kids aged 0-10 at: geni.us/WhatsGoodForYo…
Mito Foundation
@ausmito
The Mito Foundation wants to raise awareness and ultimately find a cure for this debilitating and potentially fatal disease.
Edward Godfrey
@edwardgodfrey9
Europe • Middle East Correspondent | Presenter @9NewsAUS
Tanya Plibersek
@tanya_plibersek
Australian Minister for the Environment and Water. Member for Sydney. Authorised T Plibersek, ALP, Redfern.
CMTC-OVM
@cmtcovm
We are a global organisation for people with bloodvessel malformations, their families and healthcare professionals. Our aim is to improve the Quality of Life.
Nicole Hannan OLY
@nic_hannan
Olympian, High Performance and Development Coach (Volleyroos), Naturopath, Lecturer, Researcher, MMedRes, PhD candidate
Genetic Alliance UK
@geneticall_uk
National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
Dr Marguerite Evans-Galea AM
@mveg001
Changemaker | Director, Australia’s Cell & Gene Catalyst @ausbiotech @MedicinesAus | Ambassador @WomenInSTEMM_au | #GeneTherapy #CellTherapy #AusCatalyst
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Narcolepsy Australia
@narcolepsysau
Narcolepsy Support Australia, here to support all Narcoleptics throughout Australia.
Ambassador James Larsen 🇦🇺🇺🇳
@australiaun
Australian Ambassador and Permanent Representative to the United Nations
SWAN Australia
@swanaus
SWAN Australia provides information and support to families caring for a child with an undiagnosed or rare genetic condition.
22Q11 Ireland
@22q11_ireland
Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Angelman Syndrome
@angelsyndaware
This is an awareness page for Angelman Syndrome. Please feel free to also 'Like' my Facebook page: facebook.com/angelmansyndaw…
Monash University School of Clinical Sciences
@scsmonash
School of Clinical Sciences at Monash Health is a medical school and research centre of excellence, part of @MonashUni
MdDS Australia
@mdds_australia
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
MND Research Australia
@mnd_ria
Motor Neurone Disease Research Australia has built & sustained MND research nationally for 40 yrs. MNDRA is the research arm of MND Australia.
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
SSRA | Living with SS
@livingwithss
Superficial Siderosis Research Alliance 501(c)(3) dedicated to funding research | Living With SS information and insight on living with superficial siderosis
Huntington's WA
@huntingtons_wa
A not-for-profit committed to supporting the Huntington's Disease community in Western Australia.
Scleroderma Victoria
@scleroderma_vic
Supporting the Scleroderma Community in Victoria
FoxG1Australia
@foxg1oz
FoxG1 Charity Foundation Australia. Donate , Join & Volunteer. Together we will find a Cure. Help & Support FoxG1 Affected Children and families. Fundraisers
Australasian Society of Genetic Counsellors (ASGC)
@gcaustralasia
Representing Genetic Counsellors across Australia and New Zealand. We are a special interest group of the Human Genetics Society of Australasia (HGSA).
SCN2A Asia Pacific
@scn2aaustralia
Working towards a cure for SCN2A, Raising Awareness and SCN2A Organisation for SCN2A families in Australia & across South East Asia.
Australian NPC Disease Foundation Inc
@niemannpickoz
Australian Niemann-Pick Type C Disease Foundation is a not for profit organization that is trying to raise awareness and funds for research into a cure.
Harmony Alliance
@aus_harmony
Harmony Alliance is the national alliance providing an inclusive and informed voice on issues affecting migrant & refugee women in Australia. [RT ≠ endorsement]
(Elizabeth) Emma Palmer (she / her)
@emmagenetics
Clinical Geneticist and researcher. Aims to do inclusive research enabling person-centered, strengths-based rare condition care and support. Together we can 💜
Australian Ethical Health Alliance
@ethicalhealthau
Strengthening healthcare delivery in the Australian community by encouraging a commitment to ethical practice.
PFICNETWORK
@pficnetwork
PFIC advocacy and resource network Inc. Improving the lives of patients and families worldwide affected by progressive familiar intrahepatic cholestasis.
AngelmanSyndromeAustralia
@angelmansyndro3
Improving the lives of people living with Angelman syndrome and their families through support, networking, advocacy, education and promoting research
Through the Unexpected
@throughtheunex1
Improving the experience of prenatal diagnosis. This Twitter account is aimed at clinicians, please see our Facebook/ Instagram for a parent focus.
Alpha-1 Organisation Australia Inc
@1_organisation
Together making a difference for alpha-1 antitrypsin deficiency
Duchenne Australia
@duchenneaus
Duchenne Australia
RArEST ProjectECHO
@rarestecho
A real-time case-based community of rare disease practice (#ProjectECHO) for Australian health professionals
CEO HGSA
@ceohgsa
Childhood Dementia Initiative
@child_dementia
Transforming research, care and quality of life for children with dementia so they may live long and fulfilling lives.
GeneEQUAL
@geneequal
An inclusive team working to ensure that the opinions, preferences & lived experiences of all people with intellectual disability are heard and responded to
QLDgenomics
@qldgenomics
Queensland Genomics was a Queensland Government Advance Queensland initiative which ran from 2016-2021. This account is no longer monitored or updated.
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
TheAarskogFoundation
@aarskogsyndrome
A patient and parent led non profit #RareDisease #PatientCenteredData #AskAboutAarskog? International Aarskog Awareness week 29th September - 31st Oct 2022
FOXG1 Research
@foxg1research
FOXG1 syndrome is a childhood neurological genetic disorder and is a key to understanding many brain disorders. We are pioneering research to find a cure.
Remember The Girls
@remember_girls
Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
ANE International
@aneinternationa
We aim to raise awareness, provide information & support families with #AcuteNecrotizingEncephalopathy ANE is typically triggered by #Influenza & other viruses.
Collaborative Centre for Genomic Cancer Medicine
@gencancercentre
Pioneering breakthroughs for people with cancer—a joint venture between @Unimelb and @PeterMacCC.
Dr Jane Tiller
@janemtiller
Dr by PhD. Ethical, Legal & Social Adviser, Public Health Genomics, Monash University & Senior Project Coordinator, Aust Genomics #ethics #genetics
ANZ Vasculitis Society, '26 Vasculitis Wkshop host
@anzvasc
The ANZ Vasculitis Society, for better treatment of #vasculitis by research/education/advocacy. Host, 22nd Int Vasculitis Workshop, Melbourne Feb 21-26 2026
Natasha May
@natasha__may
Health reporter @GuardianAus, formerly live blogger + rural reporter. Living on Gadigal land. Fascinated by different perspectives.
NAIDOC
@naidocweek
NAIDOC Week celebrations are held across Australia each July to commemorate the history, culture & achievements of Aboriginal & Torres Strait Islander peoples.
Health System Sustainability Partnership Centre
@pchss_aihi
A national collaborative to tackle interventions to improve the sustainability of Australia’s health system.