Apply to Join Simons Searchlight Community Advisory Committee

Applications are now open to join the Simons Searchlight Community Advisory Committee (CAC)! We are currently recruiting 13 new members to serve during the 2027–2028 term. The application deadline is September 28, 2026.

As a CAC member, you’ll have the opportunity to share your lived experience and help ensure the voices of individuals and families remain at the center of our research and community initiatives. Members provide feedback on research priorities, surveys, educational resources, communications, and initiatives such as our Transition to Adulthood program and outreach to the scientific community.

Complete the application here

Before applying, here are a few things to know:

• You must be 18 years of age or older and speak fluent English.
• The CAC consists of approximately 20 members, and we are currently recruiting 13 new members.
• You must be able to attend two virtual meetings held on:
  • Wednesday, March 10, 2027, 3:30–5:00 PM ET
  • Tuesday, September 28, 2027, 1:30–3:00 PM ET
    
• Members provide feedback through virtual meetings, working groups, online discussions, surveys, and other community engagement activities.
• Members should expect to dedicate approximately 10 hours per year to CAC activities.
• Appointments are for a two-year term (January 2027–December 2028), although members may resign at any time.
• Active members receive a $500 annual honorarium in appreciation of their participation. Active participation includes attending both annual meetings and contributing to ongoing CAC activities throughout the year.
• To ensure opportunities for new voices, individuals who have already completed two CAC terms are asked to wait at least two years before applying again.

If you’re passionate about advancing rare disease research and improving the participant experience, we’d love to hear from you.

Important links and timelines:

• Apply by September 28, 2026: https://bit.ly/CAC_2027_Applications
• Meet the current Simons Searchlight CAC membership
• CAC Charter

If you have any questions or need any additional information or support, please contact Erica Jones.