The 2023 #SATB2-Associated Syndrome Research Grant is accepting proposals through November 1, 2023. To read our full RFP and research priority areas, visit our link below.
https://t.co/LKhXvUJFFS
#RareResearch#Speech#Behavior#Sleep#Genetics
Join our partners @rare_ready for an Advocacy Bootcamp where you will learn how to communication with your state legislator and advocacy strategies to help you navigate policy hurdles. The more voices for #SATB2 and #RareDisease, the better. We are stronger together!
Today is International Thank You Day! We want to show our thanks by hosting a virtual event. Join us for ADVOCACY BOOTCAMP on 2/7 at 12:30 ET. Register at: https://t.co/wjy6W77BwI
Our family assistance program is accepting applications through the end of today! SATB2 families apply today before for up to $1,200 in financial assistance! Learn more: https://t.co/wWo0jjpOIl
#SATB2#ShowYourSAS#CareAboutRare
The 2022 #SATB2 Research Open Call closes THIS Monday, Oct. 10th at 11:59PM ET. Funding for SATB2-Associated Syndrome on important areas such as #speech, #behavior, #sleep, and #globaldelays are among some of the top priorities.
https://t.co/LKhXvUJ7Qk
If you are attending the @GlobalGenes '22 Rare Patient Advocacy Summit and you are a rare disease leader, I suggest you meet with @OdyliaTx. Happy to share our experience with them on a landscape and gap analysis to help us develop a research strategic plan!
All donations given in August are earmarked for #research. Your previous help has funded stem cells, animal models, neuron studies, bone density studies, metabolic studies, & more. The research matters. https://t.co/BDwvGKKVHO
#SATB2#rareresearch
Did you know that #speech is affected in all individuals with #SATB2 Associated Syndrome? Over 70% are considered non-verbal communicators. And many relay on #AAC to communicate. #SpeechPathologyWeek#apraxia#SLP
Did you know that 70% of patients with SATB2-Associated Syndrome have low bone density? #SATB2 impacts bone health and could put our patients at greater risk for breaks and fractures. Doctors encourage families to get a bone density scan at 4 to 5 years old. #Bones#CareAboutRare
Did you know? That #dental issues are present in all individuals with SATB2-Associated Syndrome?
Key characteristics can include: Severe crowding, Large Front Teeth,Teeth grinding, Delayed root formation, Absence of some adult teeth.
#SATB2#rareresearch#dentist
Hey @lukebryan - meet Skylie! She has a rare condition called #satb2 associated syndrome! This year for her 16th bday sheโs coming to see you TONIGHT and she wants to meet you! Sky represents one of the 650 with SATB2. Can you make her dream come true?
Hey @lukebryan - meet Skylie! She has a rare condition called #satb2 associated syndrome! This year for her 16th bday sheโs coming to see you TONIGHT and she wants to meet you! Sky represents one of the 650 with SATB2. Can you make her dream come true?
Now accepting applications for the annual SATB2-Associated Syndrome Research Grant Program until October 10th! Seeking applications that will drive momentum for our #rare community and impact the lives of our patients! https://t.co/LKhXvUJ7Qk
#SATB2#RareResearch#Genetics
With Yuri Zarate, we developed the https://t.co/kCR6X6t2RZ sharing the largest curated #SATB2 disorder dataset. Hopefully the analytics & documentation will empower families and enhance clinical use of genomics ๐งฌ. Check it out. Great work by @BruengerTobias, @arthurste