“CTD Workshop Recap” -Whitnie

When they say Paris is magical, it’s true.

The ACD was honored to attend the CTD workshop, organized by Dr. Aurore Curie, Dr. Vincent des Portes, and representatives of DeficSience and Xtraordinaire. It’s seldom that a rare disorder can generate enough attention to be included on a conference program, much less, garner the respect and interest from medical experts around the globe to deserve its own dedicated meeting.

The call for a CTD treatment is getting louder.

As parents, we know this. We are living with the daily impacts of this disorder and sometimes it feels like we are alone in this battle. Until you sit in a room full of the disorder’s finest experts; putting faces with names that you’ve only read in published reports, you don’t really realize the momentum behind this disorder. Names like Salomons, Van Karnebeek, Van de Kamp, Skelton, and many others have dedicated time to investigating this disorder. They are CTD pioneers, some diagnosing the very first CTD patients, and have paved the way for others to emerge with new ideas on how to help shape the future of CTD. For two days, CTD held center stage. Discussions focused on the disease itself, importance of collecting natural history data, potential intervention therapies, and the need for clinical trials.

The ACD was privileged to speak on behalf of the CTD community. The voice of the patient is becoming not only valuable, but necessary as we get closer to discovering a treatment. We want to thank you for your participation in the patient surveys leading up to this meeting. With data provided by our patient community, we were able to share the patient perspective relating to natural history outcomes and feelings surrounding clinical trials.

It is a privilege to represent our CCDS families. Below you will find a link to our presentation.

ACD’s CTD Presentation

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