It’s simple, our organization is run completely by volunteers, and without this group of committed families and patients we wouldn’t be able to advocate for our community and create a better life for our children and ourselves.

Make a Difference

Here are just a few ways you can volunteer:

  • Development/Website Volunteer: These volunteers will help with coordination of fundraising events across the world, and the implementation and marketing of international CCHS Day. In additional to fundraising work we always need help with website maintenance and content.
  • Event Volunteer: This position will assist in the planning and execution of our conferences. These are held every two years and are an intensive weekend where families can meet and learn more from current doctors and researchers in the fields of study pertaining to CCHS.
  • Regional Coordinator: Regional Coordinators are responsible for reaching out to families and patients in their designated area to advocate for patients and support families in their time of need. This volunteer position is evolving and may include hosting and organizing local meetups for families living with CCHS.

Current Volunteer Opportunities

We are always looking for volunteers to help us forward our mission! If you are interested, please fill out your information below and we will be in touch.