AngelmanSyndromeAustralia @AngelmanSyndro3
Improving the lives of people living with Angelman syndrome and their families through support, networking, advocacy, education and promoting research angelmansyndrome.org Australia Joined February 2020-
Tweets66
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Followers45
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Following28
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Likes201
“We never considered we would outlive Lachlan…We planned our lives around him surviving us” with @janellehmiles
“We never considered we would outlive Lachlan…We planned our lives around him surviving us” with @janellehmiles
A life is a life 💙 #covid #RareDisease #disability #angelmansyndrome
"Family of youngest Queenslander to die with COVID-19 lodges formal complaint about treatment at Redcliffe Hospital" abc.net.au/news/2022-01-1…
Just posted a photo instagram.com/p/CQvs3v-L09G/…
To our friends and families in Greater Sydney, Blue Mountains, Central Coast and Wollongong - hang in there! We are here for you over these next few weeks. Stay safe. Stay connected ❤️ #COVID #Lockdown #NSW instagram.com/p/CQmdhqtrfU7/…
Happy Mother’s Day to our Angelman family ‘mums’ of all walks and descriptions. And hugs to everyone who is missing their mum or child today 💜 #mothersday #angelmansyndrome instagram.com/p/COpQ_11LicA/…
What better front cover for the Herald Sun newspaper than a smiling Elliott ❤️ A fabulous face of Angelman syndrome and the #GoodFridayAppeal #RCH #angelmansyndrome #ASAA @ The Royal Children's Hospital, Melbourne instagram.com/p/CNKmf1dDsyM/…
Margaux loves pink & sparkles and is an amazing Ballerina- Princess with a wicked sense of humour; she endlessly loves the Wiggles and the Nutcracker #angelmansyndrome #HiddenAngels #FindYourTribe #ASAA #cureangelman instagram.com/p/CLTyxTUDzAu/…
Daniel recharges his family & friends with his energy & attitude, achieving all of this without words. He has a contagious genuine laugh. #angelmansyndrome #HiddenAngels #FindYourTribe #ASAA #cureangelman instagram.com/p/CLRRoZcjDok/…
Mendy is energetic, loves fun, action & is super cheeky. He is affectionate and is very in tune with his surroundings & the people around him. #angelmansyndrome #HiddenAngels #FindYourTribe #ASAA #cureangelman instagram.com/p/CLRQ_0-jTtg/…
Just posted a photo instagram.com/p/CLRQOhWjLML/…
Zak is happy, bubbly & very cheeky, with an infectious smile & a knowing laugh. He loves the beach, eating out, & spending time with his family. #angelmansyndrome #HiddenAngels #FindYourTribe #ASAA #cureangelman instagram.com/p/CLRP5IGjSla/…
Happy New Year and wishing everyone good health, kindness, and joy in 2021. #angelmansyndrome #covid_19 #vaccine instagram.com/p/CJvJtsAjaRJ/…
Happy International Day of People with a Disability 2020 💙 Recognising that not all disabilities are visible #angelmansyndrome #IPWD2020 #disability instagram.com/p/CIVRcfJDf74/…
“The additional stress & financial costs were one thing but the lack of proactive support was really the thing that angered me most. I felt abandoned and invisible.” How did people with disability fare during #COVID19Aus? Great report from @PWDAustralia - pwd.org.au/experiences-of…
Great advocacy from @RareVoices and @swanaus for rare disease and disability during COVID-19 pandemic in Australia #RareDisease #angelmansyndrome
Great advocacy from @RareVoices and @swanaus for rare disease and disability during COVID-19 pandemic in Australia #RareDisease #angelmansyndrome
This Easter, more than most, is a time of reflection for our community - the people we miss hugging, the jobs we wish we were doing, the places we love going. We have been feeling fragile and yes, vulnerable. But we… instagram.com/p/B-3sOzCj2wx/…
Social Hibernation for the Vulnerable – Our COVID19 journey linkedin.com/pulse/social-h… via @LinkedIn #COVI19 #angelmansyndrome #raredisease #vulnerable #protect # ASAA
Diagnosis is the bedrock of modern medicine. Accurate diagnosis is the key to future health & therapeutic outcomes. It's estimated that approx 1,000 people in Australia with AS are misdiagnosed. We need to increase the 1st time accurate diagnosis of people with AS #FindingAngels
Diagnosis is the bedrock of modern medicine. Accurate diagnosis is the key to future health & therapeutic outcomes. It's estimated that approx 1,000 people in Australia with AS are misdiagnosed. We need to increase the 1st time accurate diagnosis of people with AS #FindingAngels
SpeechLanguageAssoc @SpeechLanguageA
13 Followers 56 Following
Lisa @Lisajofaulk
12 Followers 83 Following Full time carer of severely disabled child with Angelman Syndrome and epilepsy
michelle ouellette @michelleouelle5
35 Followers 249 Following
Annie @Annie55568026
1 Followers 26 Following
Da Orange @Too_zi
87 Followers 659 Following
Emma Snelgar @ESnelgar
0 Followers 83 Following
RNS @RyanNichol49561
11 Followers 65 Following Step… no, DAD to the greatest 8 year old boy on the planet! Angelman Syndrome parent 🪽. A little bit to the left. https://t.co/3gRhht9hQr. Weather & Space
Johnny Depp @john_deppchris
97 Followers 2K Following Only account, secret account, Nice to meet you all backup account
gloria @gloria72715686
1 Followers 63 Following
Belinda Munroe @BelMunroe
195 Followers 205 Following Emergency nurse and researcher, educator, mother, wife, musician, information seeker and life long learner
Alice Minuti @MinutiAlice
20 Followers 75 Following Speech and language therapist | BSc @lastatale 🇮🇹 | MSc Student @tcddublin 🇨🇮
BlaiseBureizu Eckl Hu... @Blaisedemonkid
485 Followers 6K Following Techno Handsup Dancecore Lolycore RKT Progressive Vocal Trance Future Rave Industrial Hardcore Frechcore Uptempo Hardcore happy Hardcore
PenelopePitstop6 @PPitstop6
90 Followers 365 Following
Margaret Walshe @WalsheMargaret
2K Followers 2K Following Professor in Speech Language Pathology, Speech and Language Therapist - researcher and clinician. Based at TCD. Views are my own.@[email protected]
Medifab Ltd @MedifabLives
85 Followers 79 Following Medifab supplies a range of equipment to assist people of all ages with Medical difficulties or disabilities.
Easy to Read @EasytoReadAu
28 Followers 345 Following We make sure everyone can access information and be included. Easy Read and Plain Language communications, design and training. Email: [email protected]
Mark Williams @MolecularMark
91 Followers 662 Following Genetics | AFL | Food-Wine-Beer | Triathlon |
Dr Jane Tiller @JaneMTiller
808 Followers 827 Following Dr by PhD. Ethical, Legal & Social Adviser, Public Health Genomics, Monash University & Senior Project Coordinator, Aust Genomics #ethics #genetics
angelman-asa @angelmanasa
332 Followers 96 Following La asociación Síndrome de Angelman es una entidad sin ánimo de lucro para el soporte, asesoramiento e información, en el conocimiento de este síndrome.
Janelle Miles @janellehmiles
4K Followers 7K Following Science and medical journalist. Keen photographer. Be kind. #wethe15
CID @CIDvoice
5K Followers 849 Following Systemic advocates, capacity builders and accessible information leaders for all people with intellectual disability. Phone 1800 424 065 Email: [email protected]
Kate McKenna @kate_m_mckenna
2K Followers 1K Following State political reporter for ABC News Qld. [email protected] or [email protected]
ValB.Angel @AngelValb
64 Followers 1K Following papa d'un Angelman. Membre du Conseil Citoyens de Quartiers Ouest de #SaintNazaire
Corinne @CozzieCorinne
2K Followers 2K Following Proud #IVF mumma to @HelpingHenri #AngelmanSyndrome. 💩 @IBDSuperHeroes Founder with #Jpouch
The Adventures of Tea... @TeamSean24_Gib
2K Followers 25 Following Hi 🌎 I’m Sean & this is the story of my family’s Angelman Syndrome journey #TeamSean #AngelmanSyndrome #ForwardAlwaysForward #Forever24
Victorian Clinical Ge... @TeamVCGS
1K Followers 2K Following VCGS is the NFP genetic and genomic services arm of @MCRI_for_kids & one of the largest contributors driving genetic healthcare, research and policy in Aus.
Marcel Dinger @MarcelDinger
2K Followers 581 Following Professor of Genome Biology | Dean of Science | @Sydney_Uni The views expressed here are my own and do not reflect those of my employer.
tracy@IAm? @tracydisabilit1
304 Followers 1K Following Trying to find ME Animal lover. #ChronicPain #MentalHealth #DisabledAdvocate
CENTOGENE @Centogene
3K Followers 2K Following The essential biodata life science partner for rare and neurodegenerative diseases
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following making #rarediseases an everyday conversation https://t.co/kZWskP9Ojj
Genetic Alliance AU @GeneticAll_AU
929 Followers 417 Following Helping those with rare genetic conditions with and without a support group. Genetic Alliance AU provides resources, seminars, newsletters and advocacy.
SWAN Australia @swanaus
1K Followers 2K Following SWAN Australia provides information and support to families caring for a child with an undiagnosed or rare genetic condition.
Alicia Perera @AliciaCPerera
617 Followers 2K Following Journalist/ Digital Producer with @ABCDarwin. Formerly @TheNTNews & @PilbaraNews. All opinions my own. Have a tip? ✉️ [email protected]
Fiona Lawton @TheAngelMoma
86 Followers 155 Following
Tenisha @Ten_duckie
2 Followers 125 Following
Rare Voices Australia @RareVoices
3K Followers 507 Following Rare Voices Australia (RVA) is Australia’s national peak body for Australians living with a rare disease.
Sally Sansom @SallySansom
475 Followers 790 Following Doctoral Researcher @HERC_Oxford • Research Fellow @CPMOxford • @Clarendon_OU Scholar • Coordinator @Econ__Omics • HEOR • PCOR • Genomic Medicine • Rare Disease
Dr. Rebecca Burdine -... @rburdine1
5K Followers 3K Following Using zebrafish to study human disease and disorders. Advocate for those with Angelman Syndrome. Opinions my own. [email protected]
CID @CIDvoice
5K Followers 849 Following Systemic advocates, capacity builders and accessible information leaders for all people with intellectual disability. Phone 1800 424 065 Email: [email protected]
ABC Brisbane @abcbrisbane
278K Followers 33K Following This account has been archived as of August 2023. Follow @abcnews and @abcaustralia to stay in touch.
Annabel Crabb @annabelcrabb
491K Followers 2K Following ABC political writer and commentator, though views expressed here are mine, not ABC's. New book WELL HELLO out Sept 28, see link
Dr Jane Tiller @JaneMTiller
808 Followers 827 Following Dr by PhD. Ethical, Legal & Social Adviser, Public Health Genomics, Monash University & Senior Project Coordinator, Aust Genomics #ethics #genetics
Sally Sansom @SallySansom
475 Followers 790 Following Doctoral Researcher @HERC_Oxford • Research Fellow @CPMOxford • @Clarendon_OU Scholar • Coordinator @Econ__Omics • HEOR • PCOR • Genomic Medicine • Rare Disease
Liz Reid @LizJReid
106 Followers 139 Following Australian Federation of Disability Organisations (AFDO) President; NDIA Independent Advisory Council (NT); Australia’s Disability Strategy Advisory Council
Kay McGrath @thekaymcgrath
7K Followers 932 Following Mother, partner, former journalist, child protection and DFV champion, mindfulness practitioner.
Kim Skubris @Kim_Skubris7
2K Followers 498 Following Mum to two gorgeous boys, wife, @7newsBrisbane journo, loves a chat!
Norman Swan @normanswan
154K Followers 201 Following 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: https://t.co/E12jORDqjp
Jessica McClure @jes_SRAGlobal
67K Followers 531 Following Managing Director @SRAGlobal | Risk Management | Critical Control Management | Incident Investigation
Genetic Counselors @GeneticCouns
15K Followers 594 Following National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
Victorian Clinical Ge... @TeamVCGS
1K Followers 2K Following VCGS is the NFP genetic and genomic services arm of @MCRI_for_kids & one of the largest contributors driving genetic healthcare, research and policy in Aus.
Australian Genomics @AusGenomics
3K Followers 359 Following Our research is developing the knowledge to effectively and equitably integrate genomics into clinical care, so all Australians benefit.
Marcel Dinger @MarcelDinger
2K Followers 581 Following Professor of Genome Biology | Dean of Science | @Sydney_Uni The views expressed here are my own and do not reflect those of my employer.
Rare Voices Australia @RareVoices
3K Followers 507 Following Rare Voices Australia (RVA) is Australia’s national peak body for Australians living with a rare disease.
SWAN Australia @swanaus
1K Followers 2K Following SWAN Australia provides information and support to families caring for a child with an undiagnosed or rare genetic condition.
Genetic Alliance AU @GeneticAll_AU
929 Followers 417 Following Helping those with rare genetic conditions with and without a support group. Genetic Alliance AU provides resources, seminars, newsletters and advocacy.
Genetic Alliance @GeneticAlliance
23K Followers 2K Following A non-profit network transforming health through genetics. 🧬 We promote openness in health systems, advocacy, empowerment, informed decisions, and access.
Genetic Alliance UK @GeneticAll_UK
15K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
Rare Disease Day @rarediseaseday
42K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Rare Diseases Clinica... @rarediseasesnet
8K Followers 489 Following NIH-funded network fostering collaborative research among 19 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
EURORDIS-Rare Disease... @eurordis
32K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Dr. Rebecca Burdine -... @rburdine1
5K Followers 3K Following Using zebrafish to study human disease and disorders. Advocate for those with Angelman Syndrome. Opinions my own. [email protected]
Rare Diseases Ireland @RareDiseasesIE
4K Followers 1K Following Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
Rare Diseases @CheckOrphan
18K Followers 5K Following CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs
AngelmanSyndromeFdn @angelman
3K Followers 704 Following Angelman Syndrome Foundation advances the awareness and treatment of Angelman Syndrome through education, information, research and support.Trends for United States
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