International “KleefstraChat" Crosses Boundaries for KS Progress

On Thursday, June 17th, international representatives from the Kleefstra Syndrome patient community met to launch a series of discussions aimed at strengthening the global effort.  The group is comprised of both formal and informal group leaders, and we intend to meet monthly to discuss relevant topics. 

Our initial call centered around current Data Collection initiatives, the importance and complimentary nature of each, and how it is one of the most singularly important efforts that our patient families can participate in.  We look forward to strengthening our global communication to keep the extended community informed as to all of the exciting work being done!

Rare-X Data Collection Platform Launches with IDefine!

Last month, we held a webinar with Megan O'Boyle, rare disease mom and Patient Engagement Lead at Rare-X, and Tom Hume, Director of Marketing and Communications at Rare-X.  We walked through the platform and how patient families can "own it!"  Parents are the driving force in the rare disease community!

The Rare-X platform enables the gathering, structuring and sharing of critical patient data at scale, that will accelerate diagnosis, disease understanding, and development of future treatments and cures.

For patient and patient families, participating in this effort is one of the most important and critical efforts you can do.  Patient reported outcomes (PRO) derived from these surveys will supplement clinical reported data to create a robust and deep data collection set for KS.

Access the webinar recording and the Rare-X portal.