The KBG Foundation is a 501(c)(3) nonprofit, dedicated to providing support, assisting in research and advocating to raise awareness about KBG Syndrome.
USA
Joined June 2015
- Tweets382
- Following505
- Followers594
- Likes783
KBG Foundation retweeted
New guide available: #ANKRD11 and #KBGSyndrome in adults🧬
👉 ow.ly/kqWp50WmQal
This guide is designed to help individuals with KBG syndrome, their families, and healthcare and other professionals involved in their care.
KBG Foundation retweeted
A long journey led Annette to her son’s diagnosis: KBG syndrome. Now, through the @KBGFdn, she's helping other families get answers sooner.
We're proud to partner with the Foundation to support earlier recognition of KBG.
#RareDisease #Face2Gene #KBGFoundation #Genetics
KBG Foundation retweeted
Grateful for the research grant from the Scottish Rite Charitable Foundation! We will study the contribution of aberrant myelination to neurodevelopmental disorders. Congrats to fellow awardees @RosinLab @yunli and Qiumin Tan! cc @KBGFdn @UAlberta_FoMD srcf.ca/research-grants-2023…
KBG Foundation retweeted
.@KBGFdn is launching its Seed Funding Program! It is the first funded program established by a patient-led organization for #KBG. Donations to the Foundation advance this revolutionary program! #Give4KBG #everylinkmatters More: bit.ly/3Ufqw7L
KBG Foundation retweeted
.@KBGFdn and @CerebraNetwork are pleased to announce the BEOND Study is now open! Parents and caregivers of any #KBGsyndrome affected children aged 1-16 years or adults are encouraged to take part in this expansive behavior study. #BEONDKBG Learn more: bit.ly/3EEUw7c
KBG Foundation retweeted
Our sincerest condolences to our UK family, may peace and comfort surround you during this time of great sorrow.
Her absence is like the sky, spread over everything. -C.S. Lewis
KBG Foundation retweeted
For the first time, three different algorithms used in Face2Gene are showcased in a scientific article published in @eshgsociety journal (@NaturePortfolio).
nature.com/articles/s41431-0…
#aihealthcare #aihealth
KBG Foundation retweeted
Proud of @why_kbv for presenting her excellent work on pathological origins of #KBGsyndrome, a rare disorder, on a #RareDisorderResearchDay (despite all the unrest happening in her home country!) cc @KBGFdn
KBG Foundation retweeted
Enhancing access to treatment for rare disease patients: we need to maintain a sense of urgency.” #WODCUSA
KBG Foundation retweeted
I'm at #wodcusa! On behalf of the @kbgfdn, I was invited to attend the World Orphan Drug Congress 2021. I'm also the Chair for two panel discussions! I'm so grateful for the opportunity! Are you here too? Add me on SwapCard or LinkedIn.
facebook.com/165720769451034…
KBG Foundation retweeted
Congratulations to @karaboo_98 for winning @WCHRIUofA summer studentship award! Kara will explore white matter deficiencies in our neurodevelopmental KBG syndrome mouse model. cc @KBGFdn
Congratulations to our successful WCHRI Summer Studentship applicants for 2020! Recipients will gain experience working on health research projects under the mentorship of WCHRI members over the summer:
ow.ly/lUMf50yPnS4 #UAlberta
KBG Foundation retweeted
“He who fears he will suffer, already suffers because he fears.” - Michel De Montaigne
#RareDisease #inspiration
KBG Foundation retweeted
Did you know.... The average #raredisease patient waits four years before receiving a correct diagnosis. That's why we call it the 'diagnostic odyssey'.
KBG Foundation retweeted
Don't close your eyes to our differences or you will miss the true beauty of this world. @KBGFdn @hollyferrin Disgraceful that any child would be deemed distressing because of how an artist portrayed them in paint.
KBG Foundation retweeted
"You don't drown by falling in the water; you drown by staying there." - Ed Cole
KBG Foundation retweeted
"After leaving so many appointments with no answers, I started to fear that no doctor would ever be able to help me. I saw their questions as them not believing my symptoms, and their lack of a diagnosis as an inability to help." Annie @TheMightySite themighty.com/2018/08/undiag…
KBG Foundation retweeted
"If you don’t yet have a diagnosis for your child, remember this: you are not alone. There are hundreds, maybe even thousands of other parents out there just like us." - Krysten Clark Wilkes @TheMightySite themighty.com/2018/07/answer…
KBG Foundation retweeted
#quoteoftheday "Knowledge may be power, but compassion is life." @NettMon Annette Maughan, Parent, KBG Synd @KBGFdn #Meds4Kids #RareDisease
KBG Foundation retweeted
FDNA Announces Global Launch of Genomics Collaborative - Rare Disease Report dlvr.it/QJB69F