The CHAMP1 Research Foundation is dedicated to advancing the understanding of CHAMP1-related disorders by fostering collaboration between families, researchers, scientists, and institutions. As part of this effort, we collect and store information provided by individuals and families impacted by CHAMP1 in order to share this valuable data with authorized researchers and institutions. This consent form explains how your information will be used, shared, and protected.

What Information Will Be Collected:
By agreeing to this consent form, you permit The CHAMP1 Research Foundation to collect and store the following types of information:
Personal and medical details of the individual affected by CHAMP1 (e.g., age, symptoms, diagnosis)
Genetic and medical test results, if available
Any other relevant health or personal data provided
How Your Information Will Be Used: The information collected will be stored in a secure database managed by The CHAMP1 Research Foundation.

The data will be used for the following purposes:
To support ongoing and future research efforts aimed at understanding and finding treatments for CHAMP1-related disorders
To share with qualified researchers, scientists, and institutions conducting CHAMP1-related studies
To contribute to publications, presentations, and reports that advance the scientific understanding of CHAMP1

Who Will Have Access to Your Information:
The CHAMP1 Research Foundation will share your information only with:

Other CHAMP1 charities & non-profits.
Researchers and scientists conducting CHAMP1-related research
Medical institutions and laboratories involved in relevant studies
Public health or regulatory authorities, as required by law.
By agreeing above, I confirm that I have read and understood the information provided above and voluntarily consent to the collection, storage, and sharing of both my information and information provided on other attendees by The CHAMP1 Research Foundation for the purposes described.

By attending this event hosted by The CHAMP1 Research Foundation, you acknowledge and agree that photography and filming will take place. The CHAMP1 Research Foundation may capture images, videos, and other media during the event for the purpose of documenting and promoting its activities.

By attending, you grant The CHAMP1 Research Foundation, The CHAMP1 Research Foundation - Europe & CHAMP1 UK permission to:
Store and use any images or videos captured of you and other registered attendees during the event.
Share these images or videos on social media platforms, websites, newsletters, and other promotional materials.
Use these images or videos in publications, reports, or any other media related to the Foundation's mission.