Family Conference Summary and Highlight Video!

The Leukodystrophy Center at Children’s Hospital of Philadelphia (CHOP) would like to thank all those who took the time to join us for the 2019 AGS Family Conference on Saturday, June 22. We would also like to extend a special thanks to all those who watched the presentations online.

The event was all about connecting people and sharing smiles, and served as an open forum to exchange knowledge and best practices. Attendees spent much of the day hearing about the latest research on Aicardi-Goutières Syndrome, and were able to meet with many of the specialists at the Children’s Hospital of Philadelphia working to establish clinical care guidelines.

The event organizers would like to extend their most sincere gratitude to the Aicardi-Goutières Syndrome Americas Association (AGSAA) and The Calliope Joy Foundation for supporting this incredible event. We would especially like to thank all of the patients and families who joined us from all around the world. We look forward to seeing you at our next family event!

Thank you for your support!


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Omar Sherbini, MPH
Program Manager
Global Leukodystrophy Initiative

Presentation Recordings

Session I - History and Clinical Manifestations

Session II - AGS in the Family and Community

Session III - Poster Fair and Group Discussions

Session IV - State of Innovation

Additional Resources

  1. Books and Articles on Positive Psychology:

  2. Books and Articles for Grieving Fathers:

The meeting organizers would welcome the opportunity to share select slide decks upon request, provided the presenter has given us permission to do so. You may use the ‘Contact Us’ form to submit a request.