Merry Christmas to all🎄Wishing you a joyful holiday season and a wonderful year ahead. Please note that we will be closed from 20th December 2024 and will reopen on 4th February 2025.
SATB2 Connect
Non-profit Organizations
Darlinghurst, New South Wales 623 followers
Providing Support, Raising Awareness, Advocating, and Driving Research to Transform Lives.
About us
SATB2 Connect: Advancing Research, Transforming Lives. At SATB2 Connect, our mission is to improve the quality of life for individuals and families impacted by SATB2 Associated Syndrome. We are committed to advancing research, raising awareness, and supporting initiatives that address the unique challenges faced by our community. Driving Research for Better Outcomes We actively collaborate with researchers, medical professionals, and families to identify gaps in knowledge, promote innovative studies, and translate findings into practical solutions. By advocating for meaningful research, we aim to uncover new treatments and interventions that improve health outcomes and quality of life. Empowering Through Collaboration Our work bridges the gap between families, clinicians, educators, and researchers. Together, we: Champion research that prioritizes the needs of individuals with SATB2 Associated Syndrome. Provide resources and tools to support families navigating complex care pathways. Build partnerships that accelerate progress and ensure long-term impacts. Our Focus We are dedicated to: Advancing research initiatives to improve diagnosis, care, and therapies. Advocating for equitable healthcare policies and practices. Empowering individuals and families with resources and knowledge to navigate their journeys. Through collaboration and innovation, we strive to create lasting change for the SATB2 community. Join Us Together, we can transform lives by driving research, supporting families, and building a future of hope and progress. Learn more at www.satb2.org.au.
- Website
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http://satb2.org.au
External link for SATB2 Connect
- Industry
- Non-profit Organizations
- Company size
- 1 employee
- Headquarters
- Darlinghurst, New South Wales
- Type
- Nonprofit
- Founded
- 2021
Locations
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Primary
Get directions
Darlinghurst, New South Wales 2010, AU
Employees at SATB2 Connect
Updates
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“Although the tasks ahead are challenging for patient organisation leaders, we are often reminded that we are the driving force for change; we are the parents, caregivers and families of those individuals living with chronically complex medical challenges – this is why our passion is further ignited for positive outcomes.” Dalal, Founding Director, SATB2 Connect Sharing our insights with the community has been invaluable. By exchanging knowledge and learning from one another’s experiences, we continue to grow and support each other. Click the link and read further: The Australian rare disease community demonstrates the power of collaboration in driving meaningful change. The Toolkit highlights how organisations have worked together effectively, featuring case studies and four key advocacy approaches: * Networking and Collaboration * Communication and Storytelling * Co-Design * Patience, Persistence, and Flexibility It also includes practical tools to help advocates apply these strategies and make a lasting impact. Together, we’re shaping a future where people with rare diseases are empowered and supported. ** What advocacy approaches have worked for you? Share below! #RareDiseaseAdvocacy #Collaboration #SystemicChange #ToolkitForChange #SATB2 Rare Voices Australia UNSW Medicine & Health Macquarie University Rare Disease Awareness, Education, Support and Training (#RArEST) Project. Taking Action Together Toolkit. Improving Health and Wellbeing Outcomes for Australians Living with a Rare Disease (2024).
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3 days until #GivingTuesday 🌟 The dedication and expertise of our volunteer genetic counsellors has been key in developing the #ExplainingSATB2 campaign. Giving Tuesday reminds us how efforts like this are only possible with the support of our community. Your contribution helps support our mission to empower families and provide #clarity for SATB2 Associated Syndrome. 👉 donate or read more through the link below 🩵 thank you to our team of dedicated volunteers and you without whom this would not be possible https://lnkd.in/gJPimyxY
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We have been teasing our #explainingsatb2 campaign for quite some time now. Created by our dedicated team of genetic counselling volunteers, this is the first resource of its kind for our global community. Your support this #givingtuesday will help us achieve our mission of #clarity for SATB2, empowering families, caregivers, and individuals living with SATB2. 👉 Donate or read more through the link below 🩵 Thank you to our team of dedicated volunteers and you without whom this would not be possible https://lnkd.in/gJPimyxY
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Join our board of directors for our upcoming AGM on Sunday 1st December at 2pm Sydney time. If you have any questions or would like to register, send an email to hello@satb2.org.au
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Practical and helpful resources from Kindred, thank you for updating and sharing!
Caring for a child with disability is a uniquely rewarding experience. However, it can come with extra responsibilities and additional costs. Just in time for Carers Week, we've updated two of our popular resources - providing you with the latest rebates, cost savings, services and supports to assist you as a carer and help lighten the load. 📖 Financial Support for Carers https://lnkd.in/g6W7N8iX 📖 Practical Support for Carers https://lnkd.in/eucjnG4f
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Looking forward to sharing our organisations work at the Genetic Alliance Australia Forum, and networking with like minded people.
GAA is a community of people working together to support those living with the impact of genetic conditions. Every year we host a free event to provide networking opportunities across diverse fields to improve shared understanding of the challenges and opportunities facing our community. This year's theme centres on the paramount importance of collaboration and equity in rare and genetic healthcare. We recognise the burden on individuals and families living with rare and ultra rare conditions, the need to share, collaborate and innovate across the whole ecosystem and the critical importance of a rare model centered on equity and whole of person care across the lifespan. You can register for tickets and learn more about the event here https://lnkd.in/giXEBKxM Date: September 25, 2024 Time: 5:45pm – 9:00pm Location: Hosted by Hon. David Harris MP, Strangers Dining Room, NSW Parliament House, 6 Macquarie St, NSW 2000 You will hear from passionate advocates for research, advocacy and advancing rare and genetic care including: Professor Alex Brown – Internationally renowned Aboriginal Clinician/Researcher, ANU and Kids Telethon Research Institute Emma Weatherley- Managing Director FSHD Global Research Foundation Kym Gleeson - Co Founder of UK based Acrodysostosis Support and Research and Founder of The Frankie Foundation Dr Melanie Wong - Head of the Department of Allergy and Immunology at the Children’s Hospital at Westmead Caroyn Dews- CEO IDFA Australia Javeria Ahmad IDFA National Patient Advisory Panel and co-facilitator for the IDFA SCID Connect #GAAAnnualForum #GeneticAllianceAnnualForum Laura Cowell Nicholette (Nicky) Conway Lizzy Harnett
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Shining a light and celebrating the wonderful speech pathologists who work with the more than 1.2 million Australians with communication and swallowing support needs. Effective #communication is key to building #connections and #understanding. This year's theme 'Communicate Your Way' which explores the many ways that people communicate. Our #SATB2 community is known for a multi model approach to their communication needs, and this is why speech pathology is seen as more then just ‘verbal’ speech therapy. Speech therapy is; Alternative & Augmentive Communucation #AAC, Key Word Sign #KWS, PROMPT, and #feeding #therapy that goes beyond the #sensory challenges - to name a few 🙂 Happy Speech Pathology Week everyone! To find out more: https://bit.ly/471vRHW #SPWeek2024 #CommunicateYourWay2024 Thank you Speech Pathology Australia for sharing such important information about the different support needs this week.
It's Speech Pathology Week! Over the next seven days join us as we celebrate the wonderful speech pathologists who work with the more than 1.2 million Australians with communication and swallowing support needs. Effective communication is key to building connections and understanding. This Speech Pathology Week, learn more about the vital role speech pathologists play in helping people of all ages. Get involved and spread awareness about the importance of communication. This year's theme 'Communicate Your Way' explores the many ways that people communicate. Happy Speech Pathology Week everyone. 💫 https://bit.ly/471vRHW #SPWeek2024 #CommunicateYourWay2024
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In recognition of SATB2 Associated Syndrome Awareness Day, we would like our network to make a donation no matter the size and share this Fundraiser to make a difference. Please add in a #SATB2Connect #SATB2AwarenessDay2024 #SATB2 For more information, please visit our website: satb2.org.au Thank you for your kind support 🧡💙🧡 SATB2 Connect trading as SATB2 Gene Foundation Australia. ACNC & DGR Registered. Donations over $2 are tax deductible If Facebook is not an option, please send a request to hello@satb2.org.au for the organisation's bank details.
SATB2 Awareness Day 2024 Fundraiser - SATB2 Connect
facebook.com
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In recognition of SATB2 Associated Syndrome Awareness Day, we would like to share; What is SATB2 - What is SATB2 Associated Syndrome, the condition - and How YOU can get involved 🧡💙🧡 If you'd like to share this post to make a difference, add in a #SATB2Connect #SATB2AwarenessDay2024 #SATB2 🧡 For more information, please visit our website: satb2.org.au #RareDisease #ChronicComplexConditions #Genetics #Genes