IDefine

Rare Disease Day is almost here! No better way to celebrate RARE than by participating in the Xcelerate RARE Challenge! Your data matters, be sure to complete your surveys & upload Genetic Reports on the Kleefstra Syndrome DCP kleefstra.rare-x.org #kleefstrasyndrome #EHMT1

We are excited to share this article written by a team of scientists from Rosamund Stone Zander Translational Neuroscience Center at Boston Children's Hospital. cell.com/molecular-ther… #kleefstrasyndrome #autism #buildingabrighterfuture #intellectualdisability #ehmt1 #idefine

On #KleefstraSyndromeAwarenessDay, we would like to take a moment to thank all of you that have contributed so much to making a brighter future for our KS loved ones. We appreciate all of your continued love and support youtu.be/lpw9da-Jfc0 #kleefstrasyndrome #IDefine #ehmt1

Sept 18th join Milou Kennis along with Angela Morgan and her PhD student Lottie Morison as they discuss the Kleefstra Syndrome Speech & Language study. Info about the study will be provided as well as how to participate! us02web.zoom.us/.../reg.../WN_… #kleefstrasyndrome #ehmt1

Check out this upcoming Rare Disease workshop. You can attend virtually or in person. Register by September 11th. rarediseases.activehosted.com/index.php... #kleefstrasyndrome #iDefine #ehmt1 #raredisease

The Simons Searchlight team created new registry reports with updated information contributed by our KS families. Your participation can help guide research efforts and priorities for your community. simonssearchlight.org/research/what-… #kleefstrasyndrome #IDefine #ehmt1 #simonsearchlight

If you know and love someone with Kleefstra Syndrome, the monthly IDefine newsletter is one of the best places to read about the latest KS news. You can sign up for it at the very bottom of July’s newsletter by clicking on Manage Your Preferences bit.ly/3JJ0LZL.

Last month at this time, 200 KS families gathered for an in-person conference full of great info and connections made. Read all about it. idefine.org/connections-in… #kleefstrasyndrome #RareDisease

Hello Friends & Family! We’re excited to celebrate Jonah Chin today, our incredible KleefSTAR of the Week! Let’s send him and his family some love! 💜💫✨#kleefstrasyndrome #kleefSTAR #IDefine instagram.com/p/CgKsBD9pzPd/…

If you missed the CANDID GI conference you can watch the presentations here 👇candidgi.com/presentations/ #Kleefstrasyndrome #ehmt1 #IDefine #autism #neurodevelopmentaldisorder #digestivediseases #CANDID

Check out the newest painting by @dustijoyner representing the spinal curvature of Molly, an inspiring member of our Kleefstra Syndrome family. instagram.com/reel/Cf9KfLevS…... Click the link to watch the reel on Instagram. #kleefstrasyndrome #ehmt1 #art #beautiful #IDefine

Join us on Saturday 6th August at 4pm, for ‘Parent Power’ delivered by Charlie Beswick Tools and tips to support your resilience; the session will cover five areas where parents can develop their own resilience for the journey ahead. Link available at info@kleefstrasyndrome.org

Tuesday 19th July, 7 – 8:30pm 
Hosted via Zoom Join us for the next in our “It Takes a Village” series for a virtual resilience and well-being program for carers, delivered by holistic well-being coach Terry Doyle. To join, request link at info@kleefstrasyndrome.org.

The KS families of Marissa Christy, 3; Wynne Lockwood, 5; and Dominic Aguila, 1; all met at the Family Conference in Illinois last month and gathered again on July 10 near their homes in Michigan. #kleefstrasyndrome #rarediseases #summervibes

Hello Friends & Family! Today we’re celebrating Madison Gerstein, our incredible KleefSTAR the week! Let’s send her and her family all of our best 💜💫✨ #kleefstrasyndrome #kleefSTAR #IDefine instagram.com/p/Cf41nAyu9sV/…

Congratulations to our amazing KS mom Tanja Zdolšek Draksler, PhD on the creation of IDefine Europe! We are so excited to collaborate with Tanja to help improve the future for our Kleefstra Syndrome community. #raredisease #Kleefstrasyndrome #togetherwecan #ehmt1

Here is our latest data deliverable from @_AllStripes! Data from patients medical records are creating a growing pool of new knowledge about Kleefstra syndrome and can help advance new treatment research. allstripes.com #kleefstrasyndrome #ehmt1

Thank you to Vanessa @vvf_vanessaat @RARE_X_ for attending our #KleefstraSyndrome Conference. Vanessa answered questions and registered new families in the KS DCP. We now have over 100 participants!!! To register or update go to kleefstra.rare-x.org #ownit #ehmt1 #IDefine

After extensive investigation and months of discussion with its Scientific Advisory Board (SAB) and other experts, IDefine has narrowed its current focus to gene therapy and antisense oligonucleotides (ASOs). Read more idefine.org/update-on-idef…