Patient Outreach Committee Eager to Bring Advocates Together

The American Society of Gene and Cell Therapy (ASGCT) is run by dedicated staff and volunteer members who help shape the Society, create programs, and carry out important initiatives. Our committee members are essential to our success, as they provide expert input and guidance on almost all content ASGCT produces. The ASGCT Patient Outreach Committee is particularly engaged and continues to go above and beyond to keep up with the ever-evolving field of gene and cell therapy. We are so grateful for the valuable time they give to develop patient-friendly resources as well as meaningful sessions and workshops during the Annual Meeting and virtual events throughout the year, on top of their many other commitments. The past year was a busy one as the committee expanded Annual Meeting offerings for patient advocates, continued the Lunch + Learn series, and recreated the first three Gene Therapy 101 units. The committee had a lot on their plate but were eager to dive in and get started.  

Patient voice is a necessary and desired piece during the research and drug development processes, and the desire to share patient voices has paved the way for this group’s involvement in the Annual Meeting, the largest gene and cell therapy gathering of the year. This year at the meeting, ASGCT offered a program to encourage and support patients, advocates, and caregivers who wanted to join the amazing group of stakeholders attending.The Patient Outreach Committee hosted both a workshop and symposium, as well as new programs including a patient advocate networking luncheon and an advocate advisor program. We are so appreciative of all the committee members who volunteered their time during this busy week to advise and answer questions related to content at the Annual Meeting. This year’s offerings would not have been as successful without the committee’s dedication to this key audience or the willingness of leaders in the rare disease and patient advocate space to participate in these programs. We are excited to make these offerings even better in the future, and we hope communities continue to find benefit from attending the meeting in person.  

Shortly after the 2022 Annual Meeting, the Patient Outreach Committee kicked off the revamp of three Gene Therapy 101 units. Throughout the summer and fall months, the committee worked with staff to update resources that had proven successful but were ready for some changes. Each video required scripts to be edited and reviewed and new storyboards to be drawn up and checked for accuracy with every change. The team creating the visual animation are experts in production but not in GCT, so the committee kept keen eyes out for anything that may have been depicted inaccurately. It was a large project with many review cycles, but in a few month the committee eventually created three new videos focused on gene therapy basics, gene therapy approaches, and the clinical trials process. These new additions bring the total to 35 videos on the Patient Education site that have reached almost one million views. The passionate members of the Patient Outreach Committee made this accomplishment possible through their commitment to educating individuals on these topics.  

In addition to updating and developing material for the Patient Education site, the monthly Lunch and Learns series quickly became a large portion of what the committee has its hand in. Almost every one of our committee members took part in at least one Lunch and Learn session during this first series. The committee, led by our dedicated chair, Rachel Bailey, PhD, consistently put forth topic ideas and speaker suggestions, and members were always willing to moderate or speak themselves. Many of these members are leaders in communicating these high-level concepts in a way that non-gene and cell therapy professionals can learn from. They work to ensure they stay informed of the latest concepts of interest to the various communities who tune in to keep the sessions accurate and timely. In the last year, we held 10 sessions that collected more than 40,000 views thus far. When a committee is as engaged as this one, individuals work together to create amazing resources that enable rare disease communities to continue to grow.

The Patient Outreach Committee remains devoted to educating communities on the inner workings of gene and cell therapy and expanding resources for the patient journey as new treatments are approved for use. They serve as the thought leaders on language to best inform those with the potential to administer, research, manufacture, or get treated by a gene or cell therapy. As the stakeholder pool of patient advocates expands, so do the offerings for ASGCT community education. We truly appreciate the dedicated members of all of our ASGCT standing and scientific committees, but would like to specifically thank the Patient Outreach Committee. 

Thank you to: 

• Nicolas Abreu, MD 

• Rachel Bailey, PhD 

• Michelle Berg 

• Allison Bradbury, PhD  

• Betsy Bogard 

• Lauriel Earley, PhD 

• Vivian Fernandez 

• Kimberly Goodspeed, MD 

• Yulia Grishchuk, PhD 

• Laura Hameed 

• Jennifer Helfer, PhD 

• Sven Kili, MD 

• Sharon King 

• Emily McGinnis 

• Kim Nye 

• Carmen Unzu, PhD 

Ms. Starosta is ASGCT's patient outreach manager.

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