X Takeover for Children’s Growth Awareness Week 2023: Jill Kiernan, TBRS Community
Hello! I’m Jill Kiernan, Executive Director of @TBRSCommunity.
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
Today I am very excited to be taking over the @ChildGrowthUK feed as part of #ChildrensGrowthAwarenessWeek.
Look for our posts here on X (formerly Twitter) over the next hour. pic.twitter.com/2ywZE4gQKV
Tatton Brown Rahman Syndrome (TBRS) is a rare genetic disorder that affects growth, development, and physical health. Let's learn more about this condition and raise awareness with the @TBRSCommunity! #TBRS #ChildrensGrowthAwarenessWeek pic.twitter.com/CY2PL3Mbdw
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
Some of our older #TBRS patients were originally misdiagnosed with Sotos Syndrome, or Sotos-like before TBRS was identified.
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
Accurate diagnoses improves understanding and treatment for people with rare genetic syndromes.
Visit https://t.co/r7duipWqYR to read our stories. pic.twitter.com/jH2jCFM9hQ
Let's take a moment to appreciate healthcare professionals and scientists who support rare families.
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
Tag a healthcare professional or researcher who has made a positive impact on your child's life. I am grateful for @TBRSCommunity Scientific and Medical Advisory Committees! pic.twitter.com/kRVIUWuq2q
We are finally coming together again at the TBRS Summit: Our Family Conference and Collaborative Research Network Conference combined into one incredible event!
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
It will be held October 11 - 15, 2023 at @MorgansWndrlndhttps://t.co/LCLvUUg9VP pic.twitter.com/YKiWipmDNH
Stronger Together! @TBRSCommunity, @Malansyndrome, @ChildGrowthUK, and others have united to form the Overgrowth Syndromes Alliance (OSA).
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
We seek to align research with the priorities of overgrowth patients to identify treatments. https://t.co/v9glRnGHz5 pic.twitter.com/fx0PoT5s1e
Are you a caregiver or someone who is diagnosed with Tatton Brown Rahman Syndrome (TBRS) or another Overgrowth Syndrome?
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
Please fill out this short survey to help drive patient-centred research for Overgrowth Syndromes. https://t.co/v9glRnGHz5 pic.twitter.com/Sy86Ypi3Kq
The @TBRSCommunity believes in support, education, collaboration, and research.
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
The @ChildGrowthUK has been a key collaborator with the TBRS Community from the early days, and we appreciate their ongoing support.
We are stronger together! pic.twitter.com/XYIB770FOB
Research opportunities
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
Are you diagnosed with TBRS? Advance patient-centred research.
Participate in the TBRS Patient Registry, the TBRS Biorepository, Count Me In For TBRS, OSA Patient Priority Survey, Brain Gene Registry, and Ciitizen visit: https://t.co/JY5J02Zw37 pic.twitter.com/tTqsQrtbVH
That’s all for us!
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
Thanks so much to @ChildGrowthUK for inviting us to takeover for #ChildrensGrowthAwarenessWeek.
To keep up to date on TBRS subscribe to our newsletter https://t.co/rOotsHPg8O or join our Facebook Group: https://t.co/OqoFoRDaPu pic.twitter.com/IvFgoJN2aB
Thanks so much to Jill Kiernan @TBRSCommunity for their Takeover Hour for #ChildrensGrowthAwarenessWeek.
— Child Growth Foundation (@ChildGrowthUK) September 21, 2023
As Jill said, we're stronger together and we're so pleased here at the CGF to work with wonderful organisations like TBRS Community! pic.twitter.com/vPc0kJOdHJ
