As we are a newly formed nonprofit patient advocacy group, we are looking to establish a Family Advisory Committee to help support our work. This committee will be composed of a small group of committed parents/caregivers of children with CUL3 who are interested in volunteering their time to help further our goals. 

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This committee will be a forum for families to: 

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• Provide feedback and advice on the work of the nonprofit patient advocacy group to help guide it forward. 

• Share their personal experiences with CUL3 and provide insights on how best to connect with and support families.

• Help organize fundraising and awareness-raising events to increase visibility and support.

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If you are interested in joining the committee, please contact us.