Join Dr. Bryan Sisk & Dr. Anna Kerr for an info session Sat 6/26th at 1pm EST to learn about the VACOM research study. The goal of this project is to learn about communication & care experiences from caregivers & patients affected by vascular anomalies. bit.ly/3gHF3Y8

What a crazy news! Extremely proud and honored to receive the unsolicited triennial international "Gagna A. & Ch. Van Heck prize for incurable diseases-2021". I am very grateful for your support. Fantastic recognition for our team and patients!🍾 F.R.S.-FNRS frs-fnrs.be/fr/l-actualite…

Reminder: registration closes on October 15th! Don’t miss the first international scientific meeting for PIK3ca related conditions clovessyndrome.org/current-event/…

Today, I presented the EPIK-P1 results at #ESMO2021. These data from real life experience in adult and pediatric patients (n=57) confirm our previous findings published in @nature. Alpelisib is associated with symptoms/malformations improvement and good safety profile.Super cool!

Using a new genetic mouse model and MRI imaging in 6 patients, the Guillaume Canaud (MD, PhD) at @Univ_Paris and Inserm has discovered that the approved cancer drug #alpelisib can combat rare genetic disorders known as #lymphaticmalformations. fcld.ly/5xh5moj

Enjoyed this 100%. I never saw myself taking part in a photo shoot. It’s been quite a journey. #EmbraceYourself. Stand out. Live your life. Thanks Chase Brashears & South Boston Speedway for allowing us to capture these moments. K-T Support Group Vascular Birthmarks

Great meeting organized by CLOVES Syndrome Community with collaboration from advocates, scientists, and patients. Congrats Kristen P Davis, well done!

I wish to start my tweet this year with CM-AVM, which is a vascular disease with autosomal dominant inheritance. Typically, pt may have cutaneous capillary malformations, AV shunts in CNS, and Parkes Weber syndrome (AVM in extremities). Two genes are known: RASA1 and EPHB4.

Today is a day to celebrate RARE. What’s to celebrate? - Accepting & embracing everything that is KT Syndrome. - Finding K-T Support Group - Meeting Director mellenee - To celebrate, I’m raising money for K-T Support Group. Donate here. bit.ly/3JX61ru #RareDiseaseDay2022

tiktok.com/@catcharliepin…

Proud to share the work Bryan Sisk & I did on parents’ advice for parents & clinicians caring for children with #vascularanomalies. This is part of a study funded by CLOVES Syndrome Community & K-T Support Group. Grateful for their support & for all the parents who participated. #kchc2022

Registration is open for 2022 K-T Support Group Conference - mailchi.mp/k-t/register-n…

There is a story that I have been wanting to tell for a while regarding a scientific journey that started more than 6 years ago. It’s been a really eye-opening process and I hope it can serve as an inspiration to others, especially those starting their research careers. A 🧵...

Talented in the arts? We want to show it! - mailchi.mp/k-t/talented-i…

Panel discussion with patient advocates about the future role of patient advocates at ISSVA #ISSVA2023

Patient advocates unite at #ISSVA2023 🧬 CLOVES Syndrome Community CMTC-OVM LGDAlliance K-T Support Group HEVAS M-CM Network

Together We Change the Future | K-T Support Group donorbox.org/building-a-bet…

2025 Rare Disease Day - mailchi.mp/k-t/fall-91941…

Summer 2025 - mailchi.mp/k-t/m7vul177kq Reminder to join tonight's webinar

mailchi.mp/k-t/2026-confe…