RECOVER Representatives help inform and raise awareness about RECOVER research
Within and beyond the RECOVER Initiative, Representatives advocate for people and communities who have been impacted by Long COVID.
Each year, members of the Long COVID community can apply to serve as RECOVER Representatives. RECOVER Representatives play an important role within the RECOVER Initiative and provide unique perspectives–including their lived experiences and the experiences of their families and communities–that inform the design of RECOVER studies.
By serving on committees, working directly with RECOVER researchers, providing feedback on RECOVER study designs, and sharing RECOVER research findings with their communities, RECOVER Representatives help move the initiative’s work to understand, diagnose, prevent, and treat Long COVID forward.
Who are RECOVER Representatives?
RECOVER Representatives include:
- People with Long COVID.
- Long COVID caregivers and advocates.
- People who live or work in communities where COVID, Long COVID, or both have affected large numbers of people.
Many people serving as RECOVER Representatives belong to more than one of these groups. Representatives may also take part in RECOVER observational studies or one of RECOVER’s 8 clinical trials.
In late 2024 and early 2025, RECOVER welcomed 38 new Patient, Caregiver, and Community Representatives. A total of 112 Representatives now serve across the initiative.
When new Representatives join RECOVER, RECOVER staff work to assign them to tasks across the initiative that align with their specific interests where possible. Representatives strengthen the initiative by sharing their perspectives including:
- The physical, mental, social, and financial burden of living with Long COVID.
- The challenges of caring for people with Long COVID.
- The different and varied symptoms or experiences people or communities may have living with Long COVID.
Raising awareness about RECOVER
In addition to sharing their lived experiences to inform RECOVER studies, RECOVER Representatives help connect the initiative with their communities. Representatives’ work to share RECOVER studies helps people both with and without Long COVID understand opportunities to get involved in Long COVID research.
Representatives also support RECOVER in efforts to reach as many communities as possible. Examples of their community outreach include:
- Assisting with creation of easy-to-understand materials in different languages that explain how RECOVER research works.
- Connecting RECOVER research sites with local community partners to support the enrollment of study participants from different backgrounds and all walks of life.
- Sharing what RECOVER is learning about Long COVID with their communities through a wide variety of channels including Discover RECOVER videos, talking to policymakers, and organizing events to drive Long COVID awareness.
RECOVER Representatives also play a central role in helping to share RECOVER research results. Their contributions include:
- Writing RECOVER research publications. A story from the March 2025 RECOVER Report highlighted the specific roles that Representatives play in supporting the development of these publications.
- Selecting topics for the RECOVER Research Review (R3) Seminar series and reviewing seminar content. R3 Seminars share important RECOVER research findings through presentations and panel discussions.
Advocacy beyond RECOVER
Outside of their work with the initiative, many Representatives help raise awareness about the experience of living with Long COVID. Representatives may advocate for new policies and improved care that could help the Long COVID community. They may also belong to or lead a variety of patient and community groups.
People living with Long COVID have shared that some doctors may not be familiar with the wide range of symptoms associated with Long COVID or may not know how to best help patients with the condition. By sharing their stories, Representatives raise awareness around the need for additional research and education about Long COVID. Marta Cerda, JD, a RECOVER Representative and a co-chair of RECOVER’s National Community Engagement Group, spoke about this with The Washington Post in 2023:
“The closer we get to defining [Long COVID], the closer we can get to educating physicians so that they can help us.”
By raising awareness about Long COVID, Representatives can contribute to challenging and removing stigma around the condition. Stigma occurs when a group of people hold negative or inaccurate beliefs about a topic. For example, parents of children with Long COVID have reported that doctors may not know what Long COVID is and, as a result, have misdiagnosed their children or dismissed their symptoms. Megan Carmilani, a RECOVER Representative and the founder and President of the organization Long COVID Families, shared in a 2025 HealthCentral story how these challenges make it difficult for children to receive proper care:
“I have talked to over 400 families over the course of four years. Only four parents have said that their pediatrician knew what Long COVID was.”
Serve as a RECOVER Representative
Members of the Long COVID community can be nominated to serve as a RECOVER Representative. You can submit your own application or be nominated by someone else. Once you submit an application, you will then be asked to complete a brief survey online or over the phone to better understand your experiences with COVID, Long COVID, and research, and your interest in serving as a Representative.
To learn about the nomination process, email RECOVER_REPS@rti.org.