Need: To help young adults with chronic or rare conditions access health and educational resources and build a community of peers and advocates.
Intervention: Generation Patient summits bring together young adults with chronic medical disabilities, including chronic and rare conditions. The nonprofit organization also facilitates programming such as the Crohn's and Colitis Young Adults Network.
Results: Generation Patient facilitates about six virtual meetings per month in addition to programming around higher education, civic engagement, and more. The organization also facilitates an Virtual International Summit for young adults with chronic and rare conditions.
Having a chronic or rare condition, especially as a young
adult in a rural community, can be an isolating
experience without a community of peers and resources.
The nonprofit organization Generation Patient
(formerly Health Advocacy Summit) connects young people
ages 13-30 with a peer support community and resources to
improve their quality of life. One program is the
Colitis Young Adults Network (CCYAN), which
facilitates an international fellowship program for young
adults with inflammatory bowel diseases.
Generation Patient facilitates events, programs, and
virtual meetings for young people with chronic and rare
conditions. Currently, the organization offers about six
virtual meetings per month in addition to various
resources about higher education and civic engagement. In
addition, Generation Patient facilitates an annual
Virtual International Summit for all young adults with
chronic and rare conditions. The 2021 Virtual
Summit took place August 7-8, 2021.
Prior to the pandemic, the organization mostly provided
free one-day conferences with four discussion-based
sessions led by invited speakers such as activists,
healthcare lobbyists, medical professionals, vocational
rehabilitation counselors, and social workers.
The advocacy events focus on these areas:
Advocacy skills: Attendees listen to activists and
Education: Attendees learn tips on how to live with
Support: Attendees build a community of peers.
Resources: Generation Patient
provides connections and resources as young people
transition and transfer into adulthood with their chronic
condition. One such resource is a college transition
Here is a video about the 2019 summit in Indiana:
According to survey results, some attendees said that one
of the in-person summits was the first time they were
able to openly talk with many strangers about their
condition. Most attendees said that they were able to
connect with their peers and learn new ways to advocate
for themselves. For example, at the summit, some
attendees learned about Section
504 plans for accommodations in school.
Generation Patient reported that it was one of the first
advocacy interventions for young adults with chronic
conditions in south Texas. Program coordinators estimated
that about 20 attendees of in-person programming were
The organization and its CCYAN program have facilitated
roughly 92 meetings from March 2020 to June 2021. The
Virtual International Summit brought together 300 young
people with chronic and rare conditions from around the
world for 10 hours with over 24 speakers. The CCYAN alone
produced over 100 articles in 2020 and is on track to
produce another 100 in 2021.
Traveling to in-person summits can be difficult for rural
attendees, so program coordinators offer travel
reimbursement. Generation Patient is also piloting a
stipend program in south Texas to reimburse those taking
time off work to attend a summit.
The pandemic created major challenges due to the majority
of the Generation Patient demographic served being
classified as high-risk for COVID-19. All programming
switched to virtual, however, which allowed more access
to communities where the organization was not previously
Connect with local schools, social services, hospitals,
and religious organizations, which can provide resources
and help tailor the summit to best fit the needs of the
area. Generation Patient has a comprehensive orientation
guide for communities to create a summit in their area.
Please contact the models and innovations contact directly for the most complete and current information
about this program. Summaries of models and innovations are provided by RHIhub for your convenience. The
programs described are not endorsed by RHIhub or by the Federal Office of Rural Health Policy. Each rural
community should consider whether a particular project or approach is a good match for their community’s
needs and capacity. While it is sometimes possible to adapt program components to match your resources, keep
in mind that changes to the program design may impact results.