Syndromes Without A Name in Fairfield, Victoria | Community organisation

Syndromes Without A Name

Locality: Fairfield, Victoria

Phone: +61 404 280 441

Address: PO Box 390 3078 Fairfield, VIC, Australia

Website: http://www.swanaus.org.au/

Likes: 1643

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• Non-profit organisation
• Charitable organisation
• Community organisation

16.05.2022 Tomorrow is #ElectionDay! Thanks for all those who have engaged with our content and advocated for change. Thanks to the Community Advisory Board who helped identify key issues for our families and put together the SWAN Election Campaign. To summarise, our campaign has centred around the following topics: Diagnosis NDIS Access to Healthcare... Improved Psychological Supports Productivity Commissions Review We hope for political support and funding in these areas for a better, brighter future.

10.05.2022 One of the key issues in our election campaign is improving psychological supports. On the National Day of Action to Defend the NDIS, Sam mentioned a lack of NDIS funding for these supports, which is a reality for many SWAN families too. There is also a shortage and high turnover of support workers. Constantly training new workers can be incredibly taxing for SWAN families, especially when NDIS plans do not cover the cost of buddy shifts. You can view Sam's story amongst othe...rs on our Youtube channel: https://youtu.be/6Of5hWbMqWA #DefendOurNDIS #Election2022 #RareDisease

25.01.2022 Did you know that SWAN Australia is now offering consultations with a Telehealth Patient Pathways Nurse? This is a free and confidential information support service for SWAN families living in Australia. SWAN is grateful to the Australian Department of Health who are funding this initiative. The patient pathways nurse initiative is just one of the examples which show how the #GUARD collaboration, comprising of Genetic Support Network of Victoria (GSNV), Genetic and Rare Disea...se Network, Genetic Alliance Australia and #SWAN have come together along with the Centre for Community-Driven Research (CCDR) to support #Undiagnosed and #RareDisease patients. To secure an appointment, please complete the booking form on our website: https://bit.ly/3imqSGH and our Patient Pathways Nurse will contact you directly to arrange a time for a consultation. Or if you would prefer you can call the Patient Pathways Nurse direct 1300 755 050 to assist you with making an appointment. The Patient Pathways nurse may be able to assist you with any questions and/or concerns you may have including: Questions you may have about your child’s undiagnosed or genetic condition. Emotional support. Information on how to manage life with your SWAN child. How to navigate supports, services and resources that may be able to assist your family with caring for your SWAN child. Help on guiding you through the healthcare system to access all the relevant services.

25.01.2022 #SWANaus provides information and support to families caring for a child with an undiagnosed or rare disease.

24.01.2022 State-based genomic screening labs to be united in $3.3m project http://bit.ly/2Rw9lRt. Easily accessible data shared between labs will improve our capacity to use genomic sequencing to understand how #COVID19 behaves and spreads. Illumina, Inc. genomic sequencing machines will be used to upgrade Australia's genomics capacity. It is great to see labs working together to streamline genomic processes so we can learn more about #COVID19. Understanding the disease will allow us to treat it and work on preventative measures.

24.01.2022 Did you know #DSS now has a Disability Information Helpline and Coronavirus information for people with disability? You can find out about information and referrals for people with disability and their supporters. https://bit.ly/2QVAv3H #DisabilityHelp #coronavirus

21.01.2022 https://ministers.dss.gov.au/media-releases/6156 At last a response to the Tune Review and it is a positive for NDIS Participants.

21.01.2022 A big thank you to Mandy and Kate from Too Peas in a Podcast for dropping into our virtual AGM last night and making us laugh and cry with them. Mandy and Kate are so supportive of our #SWANaus #community. Thank you for your raw and honest answers to our questions and making our families feel less isolated. If you have not had a chance to check out their podcast, it is well worth a listen to gain a better understanding of families caring for a child with health issues and/or disability. More information can be found on their website: http://toopeasinapodcast.com.au/ and you can click through to your favourite podcast listening App from there.

21.01.2022 Today is #GivingTuesday - the day which inspires Australians to give back. GivingTuesday https://www.givingtuesday.org.au/ is an opportunity to give back to the organisations making a difference in people’s lives. At SWAN Australia, we do our best to support our community and limit the isolation that is so often felt when you care for a child with an undiagnosed or rare genetic condition. ... Please share this post and donate if you can help support SWAN families: swanaus.org.au/donate. Many thanks in advance for your support.

21.01.2022 Parents breathe sigh of relief as special needs kids return to school https://bit.ly/2GTFuQL. Lovely to see one of our #SWANaus families in The Age today. The last few months have been very challenging on so many. We trust all our SWAN children had a great day back at school today.

21.01.2022 I would be curious to hear from anyone whose SWAN child has had a negative experience of kindergarten, school or with post-school options. This will inform our submission to the government with regards to the 2020 Review - Disability Standards for Education 2005. Please text the SWAN phone 0404 280 441 with a suitable time to give you a call. Many thanks

20.01.2022 It is great to see some #SWANaus families feature in this video. I just love the smiles on the kids' faces. Thank you Carolyn Horn Dumond and #Illumina for all you do in supporting our #RareDisease community.

20.01.2022 RESEARCH OPPORTUNITY - can you participate? FaceMatch Acceptability and Useability Study - Does your child have a genetic condition that has a risk of developmental or intellectual disability or are you still searching for a diagnosis? We need your help to test FaceMatch, a new digital platform developed by parents, doctors and scientists to help parents find a diagnosis. Testing will take around 20 minutes, and is done entirely online at a time that suits you. Please contac...t Stephanie Quattromani: [email protected] for more information. Many thanks if you have already participated in this project.

19.01.2022 It was great to be able to hold a face to face #SWANaus event in QLD. Many thanks to the families who attended, @EPIC_AU_ for their kind sponsorship of our afternoon tea and to Bec Glover our SWAN mum and volunteer for hosting our event. #PeerSupport #Undiagnosed #RareDisease

18.01.2022 So many #SWANaus children struggle to wear a mask.

17.01.2022 The Epilepsy Foundation are running a childhood epilepsy specialist series that may be of interest to some SWAN families on Sunday, 8 November. Please visit their website to find out more. https://epilepsyfoundation.org.au//childhood-epilepsy-spe/

15.01.2022 https://www.ndis.gov.au/coronavirus/latest-advice-ndis This may be of interest to some of our VIC and NSW families. It is our understanding If you use a service provider or agency to provide care to your SWAN child, they are responsible for supplying masks to their staff. If you employ carers directly, the responsibility is yours. You can claim the costs of face masks from the NDIS if there use is for disability-related care e.g. the personal care that needs to be provided to an NDIS participant needs to be closer than 1.5 metres.

15.01.2022 There is still so much we do not know about these independent assessments. Where is the transparency about what tests will be used? Where is the consultation with participants and/or their families? Independent assessments at every plan review were not part of the Tune Reviews recommendation. How can theses assessors be independent when they are selected by the NDIA? How will individual assessments work for participants with complex needs? Why have these assessments if the assessors cannot suggest support needs? We need answers, Stuart Roberts! Maybe if you consulted with the disability community, you would have some answers for us, or you would not be introducing individual assessments other than at the time of applying to be an NDIS Participant.

14.01.2022 This is great news!

14.01.2022 Australia Creates First National COVID-19 Tracking System https://lnkd.in/g57cFeG. Genomic sequencing will enable Australia to gain a clearer understanding of how #COVID19 spreads and behaves. There is value in collaboration between labs and using the same systems to analyse data. This is is a great investment by Illumina, Inc. and the Australian Government utilising the Medical Research Future Fund

13.01.2022 This might be of interest to some of our SWAN families.

11.01.2022 We need many more of #ChangingPlaces in Australia. Would you change your child on a toilet floor?

11.01.2022 Did you know Playgroup Victoria are running virtual playgroup sessions: https://www.playgroup.org.au/playgroup-at-home/

10.01.2022 SWAN is very concerned about the introduction of the NDIS proposed Independent Functional Capacity Assessments. We encourage all our members to advocate where they can. Please consider contacting your local politician, writing to Minister Roberts directly or via Every Australian Counts https://everyaustraliancounts.com.au/questions-for-ministe/ and completing the Change.org petition https://www.change.org/p/stop-ndis-from-rolling-out-indepen. Let's keep fighting for the #NDIS our kids deserve. If anyone has any questions about Independent Functional Capacity Assessments please email [email protected]. Thank you in advance for your support.

08.01.2022 Happy International Genetic Counsellor Awareness Day. A big thank you to the #GeneticCounsellors who support #SWANaus families every day. They provide information, support and assistance to our families about genetic testing and genetic conditions. Genetic Counsellors and Masters of Genetic Counselling Students also support genetic peer support groups such as #SWANaus, something we are extremely grateful for. #GCAwarenessDay #Support #GeneticConditions

04.01.2022 The #NDIS announced today three consultation papers: - Consultation paper: access and eligibility policy for independent assessments - Consultation paper: planning policy for personalised budgets and plan flexibility... - Consultation paper: supporting young children and their families early, to reach their full potential Submissions are due 23 February 2021. If you would like to find out more, read the discussion papers and make a submission, please visit: https://www.ndis.gov.au/community/have-your-say. If you would like some assistance with making a submission, please email [email protected]. SWAN is pleased to see that community consultation is happening on these three issues. #NDISMakeItWork

01.01.2022 Why is the NDIS not being transparent about individual assessments?