What do you consider to be a “young adult”?

Generally, we consider young adults to be between the ages of 16 and 35. However, this is only a rule of thumb and we have had folks participate in our programming who are younger than 16 and older than 35. We recognize the chronic illness experience of “losing” time and accordingly are not strict on age requirements. If “young adult” feels authentic to your experiences and needs, then consider yourself part of Generation Patient!

Why does “young” in young adults matter?

It is crucial to emphasize the significance of focusing on young adult patients who are diagnosed with chronic medical conditions early in life. These individuals endure the consequences of their illnesses throughout their lifetime, extending beyond the confines of the medical system. Regrettably, many existing systems have yet to adapt and offer suitable accommodations and support tailored to our demographic during this pivotal transitional period. This deficiency in visibility and comprehensive assistance significantly contributes to the continued hardships and limited opportunities experienced by young adult patients as they enter the workforce and navigate institutionalized systems like higher education. By addressing these challenges and providing holistic support, we can empower young adults with chronic conditions to not only navigate the present but also shape a more promising future trajectory.

Are you specific to any condition? 

We are NOT disease-specific. We have young adults with all chronic and rare conditions participate in our programming. From Turner’s syndrome, Ehlers-Danlos syndrome, Lyme, lupus, arthritis, etc. We also have many in our community who are currently searching for a diagnosis.

We have only one disease-specific program, the Crohn’s and Colitis Young Adults Network, where we focus on young adults with inflammatory bowel disease. You can learn more about the CCYAN here. There might be a misconception that Generation Patient is focused on IBD, but it is only the CCYAN that is!

How do you define chronic or rare medical conditions?

Our work centers on young adults with chronic health conditions. Such conditions may persist over an extended period of time, but are typically lifelong and are generally not considered easily curable; usually requiring ongoing management and treatment to control symptoms, complications, and maintain survival/ quality of life. Such conditions can affect various systems and organs of the body. Examples include (but are absolutely not limited to) type 1 diabetes, cystic fibrosis, Crohn’s disease, rheumatoid arthritis, lupus, and ankylosing spondylitis.

What are your funding sources?

We are proudly independent of all private healthcare industry funding, including from the pharmaceutical, insurance, and hospital industries. We are grateful to our supporters that make our independence possible and enable creativity in developing programs that meet the needs of our young adult patient peers. 


Our 2023 funders include: 

  • Arnold Ventures

  • Commonwealth Fund

  • Connecting to Cure Crohn’s and Colitis 

  • Disability Inclusion Fund 

  • The Leona M. and Harry B. Helmsley Charitable Trust

  • Third Wave Fund


We encourage you to investigate how the millions of dollars that many mainstream patient advocacy groups receive from the private healthcare industry pose deep challenges to the integrity of patient advocacy groups.

What is peer support? What are your peer support meetings like? 

Peer support, as it pertains to young adult patients, refers to a form of assistance and encouragement provided by individuals who share similar experiences of living with chronic medical conditions or disabilities during the transitional phase of young adulthood. In a peer-support setting, we, as young adult patients, can benefit from the unique perspective and understanding of our peers who have firsthand experience with the difficulties of managing complex medical conditions during this specific life stage. These connections can greatly improve overall disease acceptance and trajectory.

During our peer-support meetings, young adult patients have the opportunity to connect with peers who have gone through similar challenges, often for the first time. Our meetings enable attendees to exchange knowledge and emotional support, while also developing the language to convey their experiences and self-advocacy skills.

What do you do besides peer support and events? 

We have LOTS of programming beyond our peer support meetings and events. We have resources in areas of higher education, programming in health policy, as well leadership programs through our health policy work. Please see the graphic below to understand the breadth of our work! 

How can I get involved as a provider, parent, care partner, or ally? 

Connect with us a message at admin@generationpatient.org