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Meg Hefner Professional Day

In recognition of her years of dedication, service, and work in the field, the Professional Day at Conference is now known as the Meg Hefner Professional Day.

The CHARGE Syndrome Foundation’s biennial Conference is the largest gathering of individuals with CHARGE, their families and the professionals that serve them in the world.  The last couple of conferences have been attended by more than 1,200 people from the vast majority of the states and more than a dozen countries. We expect at least that many in attendance, including at least 250 individuals with CHARGE syndrome, at our upcoming Conference this summer in Orlando.

The Conference kicks off with the Meg Hefner Professional Day which is an opportunity for CHARGE professionals to come together to share information, research and best practices with one another and the presentations are specifically for that audience. This one day conference includes plenary presentations of interest to all professionals, breakout sessions in the areas of Medical/Clinical and Educational/Therapy, and time during the poster session, lunch and breaks to allow meeting and mingling among CHARGE professionals.

Most of these professionals will stay on for the International Conference and many will be presenting their information at the International Conference with their talks geared toward families and individuals with CHARGE.

Note: Families may attend professional day, but it is geared toward professionals. There is no camp on Professional Day.

Posters & Information Central

Professionals are invited to prepare posters summarizing their work for presentation during Professional Day and the main conference. During Information Central conference attendees will have the ability to view the posters and ask questions.

Research at Conference

We all want to learn more about CHARGE, and that means research. Because CHARGE is relatively rare, most professionals only see a few affected individuals in their local practices. Conference attracts hundreds of individuals with CHARGE and their families, providing a wealth of potential research opportunities for the researchers and for families. Conference will provide a unique opportunity to bring international researchers and professionals working in this rapidly evolving field together, alongside those impacted by CHARGE syndrome to conduct research, develop joint research projects, present papers on their latest developments and collaborate on funding opportunities. Previous conferences have included everything from collecting DNA to interviews about feeding, language and behavior. There will be an area dedicated to the various research projects being conducted at conference.

Research Advisory Meeting

The purpose of this meeting is to engage in robust discussions regarding the current status of CHARGE related research and to outline future research goals in a collaborative setting. Researchers will have the opportunity to share research results and break out into small groups and explore novel approaches together.

Registration Fees

Fees for the 16th International CHARGE Syndrome Conference will be released at the beginning of 2025.

Registration includes meals. Attendees are still responsible for their own travel expenses and hotel reservations.

Registration Opens Winter 2025.

Funding Opportunities

The Foundation has made a limited amount of funding available to defray the expenses of attendance for researchers planning on conducting research on-site or attending the Research Advisory Meeting.