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Recruitment campaign: 

October 2023 Expert Panel Meeting

Event Description from ACD Website:


Goal: Increase understanding of CCDS in the patient, caregiver, and clinician communities and connect clinicians worldwide to create a clinician network for support.


Agenda: This quarterly webinar series presents CTD, GAMT, and AGAT case studies developed through our PCORI funded PaReNts Project, with a focus on caregiver concerns. Panel discussions are led by Dr. Sylvia Stockler and world-renowned experts from the field of CCDS. Additional guest panel members attend as relevant to the cases being discussed.


Clinicians and parents in attendance can post questions in the chat and observe the panel discussion live. Recorded discussions include a summary slide of the experts’ discussion. To hear the full discussion, be sure to attend the live meeting.

Campaign Outline

Define goals of recruitment campaign / examples:

    • Number and type of registrants

      • # of parents

      • # of other family members

      • # of other caregivers

    • Engagement goals

      • Registration

      • Questions submitted by event attendees

      • Success stories submitted by event attendees

    • Long-term goals beyond the event itself (if applicable) 

      • Information and discussion is useful to CCDS parents in observable ways (topics discussed with clinicians, further engagement in the ACD community and support groups, etc.)

  • Campaign schedule / example:

    • Quarterly newsletter (2 newsletters prior to deadline if lead-time permits): Event/registration announcement + accompanying social media posts

    • Quarterly newsletter (1 newsletter prior): Repeat announcement if time allows + accompanying social media posts

    • Focused email reminder (2 weeks prior) targeting those who have opened emails and links + additional social media posts if deemed necessary based on assessment of campaign

  • Media

    • Primary Copy

      • Content

        • Main details of event and call to action (register and submit questions)

        • Language and information that appeals to targeted participants

      • Placement

        • Dedicated page on website (plus links in menu or relevant landing pages)

        • Email campaign

    • Images calling out most important details and call to action for email and social media channels

  • Assessment schedule (based on campaign schedule)

  • Adjustments to schedule or frequency of events during campaign based on assessment

Eblast with call to action

A note on my choices:

In my experience, busy parents cannot always read every word of an email. With that in mind, I incorporate some TLDR-friendly elements (TLDR = "too long didn't read"). In this example, I made put very basic info (what, when, who, etc.) at the top in larger font and the action items in easy-to-see buttons. It means there is some redundancy but I find it useful when someone only has time to scan an email or is coming back to a message with the intent of getting things done quickly and efficiently. The ultimate goal is to help out those who only have time to read 10% of what I send them by controlling which 10% of the email they absorb and respond to most easily.


I added the refresher on what the PaReNts project at the bottom for any member or parent that may be new, not up-to-date on all the recent initiatives, or those who have a lot going on and may not remember.

CCDS Expert Panel Meeting

October 6, 2023 

12:00PM - 1:30PM Eastern 

For CCDS parents and clinicians

Register now

Dear ACD families,

The next CCDS Expert Panel in our webinar series will be on Friday, October 6, at 12:00PM Eastern Time. We invite you and your family clinician to join us for a presentation of case studies from the “Parents Advancing Research Networks” (PaReNts) project. 


This is a unique opportunity to learn about how CCDS parents are working closely with doctors as they determine what outcomes are important for measuring the impact of CCDS and various treatments.

We also invite you to submit your questions and share your own success stories prior to the event. Your input is an important contribution to the discussion.


The ACD Team

About the PaReNts Project

Researchers across the globe are studying treatments to improve care for individuals with Creatine Transporter Deficiency (CTD) and GAMT Deficiency (GAMT). Those research projects need appropriate outcome measures to determine success and the PaRenTs Project provides a way for CCDS families to help inform and prioritize the outcomes that make the biggest difference for the patients.

Social Media Images

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