CTNNB1 Connect & Cure @ctnnb1cc
Connecting families, raising awareness, finding treatments and a cure for CTNNB1 Syndrome 🧬💛💙 https://t.co/dZAf1GmhAJ curectnnb1.org Joined January 2023-
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We celebrate #CTNNB1AwarenessDay w/ our friends at @ctnnb1org and @ctnnb1cc! 🌟 We have 254 participants with #CTNNB1 -related syndrome registered in #SimonsSearchlight. Find resources, data, gene guides and research at bit.ly/CTNNB1Report. Let's raise awareness together! 💛
Meet a new Member of the NORD family of patient organizations: @ctnnb1cc! CTNNB1 Connect and Cure is a nonprofit that fund research into treatments and a cure for #CTNNB1 and connects families to help their children live their best lives. Learn more: curectnnb1.org
There’s No Place Like Hope @GlobalGenes #WeekInRARE Community, collaboration, and connection, oh my! 3 amazing days of sessions focused on advocacy best practices, actionable strategies for our communities, and valuable connections within the rare disease community
Thank you again, Rare Revolution Magazine, and for those following along this #TuesdayTakeover! We'd love to stay in touch - Please connect with us on social media! You can learn more and sign up for our newsletter here: curectnnb1.org #ctnnb1syndrome @ctnnb1cc
CTNNB1 Awareness Day is in TWO DAYS! On Thursday, the 25th, will you join us in raising awareness for this rare disease? curectnnb1.org/ctnnb1-awarene… #strongertogether #raredisease #ctnnb1awareness #ctnnb1syndrome #careaboutrare @ctnnb1cc
Our dragonflies are our #why! As we fight for them, we are constantly encouraged by their adaptability, fueling our hope for a better future. Check out the faces and stories of our dragonflies at curectnnb1.org/community/meet… #ctnnb1syndrome @ctnnb1cc
@ctnnb1cc is 100% volunteer-run so that our funds can go directly towards our mission. Behind everything we do lies a grounding focus on supporting our patient community, nourishing connections, and progressing the research for treatments. curectnnb1.org/about/
Our community and research network are working tirelessly towards potential treatments for those affected by CTNNB1 Syndrome. With 6 approaches underway, we are extremely hopeful for the future! Learn more at curectnnb1.org/research/ @ctnnb1cc
About 1/4 of #CerebralPalsy cases have a genetic cause, and we are at the top of the list! #CTNNB1 symptoms that general CP patients may not be screened for: exudative retinopathy, tethered spinal cord, and heart defects. Learn more at curectnnb1.org/ctnnb1-and-cer… @ctnnb1cc
The symptoms? Many. The culprit? #CTNNB1. Where are the rest of our patients? Genetic testing holds the key. Publications about CTNNB1 Syndrome here: curectnnb1.org/research/publi…. @ctnnb1cc
Special shoutout 2 Shayla in Oakland for her incredible volunteer work, she's sending our president to her 1st @GlobalGenes conference this September! You rock, and we love you! ❤️✈️ #Grateful #RareDisease @ctnnb1cc
Thank you Rare Revolution Magazine for this #TuesdayTakeover! We are so excited to share information about @ctnnb1cc and CTNNB1 Syndrome with you today. We hope all of the RRM followers enjoy and join us for CTNNB1 Awareness day on the 25th! #ctnnb1syndrome #awareness
Make sure to set your Pubmed searches...This month "cerebral palsy genetic" popped up so many ROCKSTARS I have the fortune of working with, collaborating with, learning from and more! @drbhooma @drdrariel @BCH_PoduriLab @CPRN_org @WeinbergCP
Attention to those attending the @GlobalGenes Rare Drug Development Symposium next week: @ctnnb1cc
Our participants have collectively completed 57,460 surveys to date. 🎉 We thank each of you for sharing invaluable information and propelling scientific research forward. 💫 Please finish any pending surveys by visiting your dashboard at bit.ly/Simons_Searchl….
Today is the day! Help us reach our goal of $20,000! #ctnnb1 #givingtuesday
What if we told you there is a diagnostic odyssey fast pass? Clinical-grade #wholeexomesequencing AND it’s from the comfort of your own home. Check your eligibility here: curectnnb1.org/symptom-checke…
#RareDisease families, have you received a rare genetic diagnosis for your child in the past 5 years? If so, we want to hear from you! Help us better understand the parent perspective to inform best practices for providers when giving diagnoses. Link: unmcmmi.co1.qualtrics.com/jfe/form/SV_bx…
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