SATB2 Connect

SATB2 Connect was created to raise awareness, advocate, raise funds for research to educate, support & collaborate for those living with SATB2

[SATB2 Connect @SATB2Connect]

Happy Easter to you and your loved ones 🧡

[SATB2 Connect @SATB2Connect]

Here’s to International Women’s Day!

Let us celebrate all the wonderful & strong women in our lives. May it be our mothers, grandmothers, sisters, daughters, friends, carers or mentors; thanku for your endless support, love, kindness & care. @asociacionsatb2 @Satb2Gene @Satb2uk

[SATB2 Connect @SATB2Connect]

Rare Disease Day-Our community has grown to include 50 individuals across Aus & neighbouring Asia-Pacific
The rare community will continue; raise awareness share experiences & advocate for rare diseases as a human rights priority while working on building a more inclusive society

[SATB2 Connect @SATB2Connect]

#WorldThinkingDay #RareDiseaseAwarenessDay #RareDiseases #SATB2 #SAS #SATB2Connect #advocacy #beanally #ally #patientrepresentation #disruptinghealthcare

[SATB2 Connect @SATB2Connect]

February 22 is World Thinking Day and we wouldn’t be surprised if many of you haven’t heard about it. Each year the theme changes and for 2024 the theme is… Our World, Our Thriving Future.

See the comments for the rest 😉

[SATB2 Connect @SATB2Connect]

If you would like to continue this discussion and read more about being an ally, I recommend reading Kristy Dickinson’s post ‘The Importance of an Ally’ on LinkedIn.

Happy World Thinking Day!

[SATB2 Connect @SATB2Connect]

The rare disease community is small and we need many more voices to raise their voice alongside us so we can change the world as we know it. 

Don’t underestimate the change that you are capable of.

[SATB2 Connect @SATB2Connect]

It’s your voice we need to raise awareness, change policy and research new accessible treatment methods. It’s the innovation and skills of biomedical engineers, speech therapists, lawyers and genetic counsellors we need. This is only a few of the many we need in our corner.

[SATB2 Connect @SATB2Connect]

BUT(and it is a big but) to ensure a ‘Thriving Future” we also need the help of those in our community who aren’t directly impacted. We need the help of an ally. It’s your voice we need to disrupt our healthcare system and initiate the much needed change.

[SATB2 Connect @SATB2Connect]

It makes sense really that the loudest voices in the room belong to parents and caregivers. No one will fight harder than those who seek to improve the quality of life of their loved one.

[SATB2 Connect @SATB2Connect]

Most advocates are introduced to this world because the ‘challenge’ has directly impacted their lives. This is especially true for rare diseases where advocates are required to fight daily for the care they need.

[SATB2 Connect @SATB2Connect]

Here at SATB2 Connect, we thought today would be the perfect day to discuss how we can improve the future. Specifically, what role can we play to ensure a “Thriving Future”? 

To answer this question we need to understand the importance of an ally and why we need more.

[SATB2 Connect @SATB2Connect]

Merry Christmas🎄
Best wishes for a joyous Christmas filled with love, happiness, & prosperity 🧡💙🧡
We will be closed from 22nd Dec 2023 & will reopen on 5th Feb 2024.
Our AGM is planned for 28th Dec @ 7pm AEDT send an email to [email protected] if you wish to attend online

[SATB2 Connect @SATB2Connect]

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[SATB2 Connect @SATB2Connect]

International Day of People with Disability, is a UN day.
Theme for 2023 IDPwD ‘everyone to work together to make the world better & fairer for people with disability’
Click on the link below to access an easy read document, Created by DDS

https://t.co/vvxSBXtnHh

[SATB2 Connect @SATB2Connect]

@NatalieMunro3 Zlzlzl Zac eess

[SATB2 Connect @SATB2Connect]

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[SATB2 Connect @SATB2Connect]

-Administrative data, follow up & management
-Understanding the standards of #care
-The #modelling method
-Understanding the common pathways to #diagnosis, the #time & #cost associated & in comparison when using WES
#genomics #raredisease #
#SATB2 #htai2023adelaide

[DalalDB @DalalDB1]

Costs & #effectiveness of Whole Exome Sequensing (WES) in patient with unsolved and rare disease through the #diagnostic #pathways.

#genomics #epilepsy #raredisease #standardsofcare #SATB2 #htai2023adelaide

[SATB2 Connect @SATB2Connect]

#HTAi2023Adelaide

[DalalDB @DalalDB1]

The hidden burden of #patient and families on #raredisease.
#DeborahMarshall #HTAiAdelaide2023