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During our recent town hall on Advancing Systems Change for Young Adults with Chronic and Rare Conditions, Generation Patient’s Executive Director Sneha Dave shares how the medical advisory board and patient advisory board worked together to identify topics impacting young adult patients interacting with the healthcare system.

Each of these roundtables are available for playback at generationpatient.org/roundtables, and you can see the full town hall on our YouTube channel! Thank you to the Lucile Packard Foundation for Children’s Health for their support of this project.

For many young adults living with chronic conditions, the financial toll is devastating and could lead to forced poverty, income volatility, and in some cases, homelessness.

These are realities that don't get talked about nearly enough.
We are proud of community member Rachel Lichtman, who shared her lived experience and co-led a roundtable session on Forced Poverty and Income Volatility alongside Dr. Niraj Sharma.

Watch the full roundtable on our YouTube channel or at the link in our bio: https://www.youtube.com/watch?v=LgHIFH12sms&t=1074s

Tomorrow, Generation Patient Executive Director Sneha Dave will be joining “Strengthening Universal Health Coverage in a Transforming World, an official side event of the 79th World Health Assembly in Geneva, Switzerland. Generation Patient is proud to partner on this event aside STUF United Fund Inc., Global Health Council, International Medical Informatics Association, TruMerit, and Taiwan Young Patient Association.

To attend, scan the QR code to register!

Generation Patient recently hosted a community convening titled, “The Patient Voice: Centering Independent Patient Advocacy”, with support from the The Greenwall Foundation through its 2025 Bridging Bioethics Research & Policymaking Grant. The roundtable discussed an important question in healthcare advocacy: What does truly patient-led policy look like? Patient-led policy means ensuring that patients have a direct role in shaping the quality, cost, and access of the care they receive, because patients are the ones most impacted by these decisions.

During the discussion, our Policy Manager, Alexander Naum, explored the growing prevalence of industry influence within patient advocacy spaces. These realities raise critical questions about independence, representation, and whether advocacy efforts fully reflect patient priorities or the interests of industry stakeholders.

At Generation Patient, we believe patient voices must remain at the center of healthcare policymaking.

Navigating your own care as you become an adult and going to appointments on your own can be daunting. This transition is a pivotal stage in a young adult's healthcare journey.

Our first roundtable in partnership with the Lucile Packard Foundation, Caroline Walsh shared a few of her own challenges during this transition:
💙 Not having guidance or tools for mental health
💙 A hindered sense of independence in managing her care
💙 Having to figure out how to log her chronic pain on her own

Our discussion was co-led by Caroline, a young adult patient from our community with experience navigating this transition, and Susan Shanske, MSW, Director of Transitional Care Support at Boston Children’s Hospital.

See the full discussion at: https://generationpatient.org/roundtables

Last month, Generation Patient was honored to participate on a panel at the Family Voices Leadership Conference to discuss the challenges facing young adult patients living with financial instability. During the panel, our Policy Manager, Alexander Naum, spoke about the need for multisystem approaches to address the poverty trap many young adult patients experience, including barriers to employment, housing, adequate nutrition, and access to public benefits.

He also challenged us to rethink why income and ability to work are so closely tied to healthcare access, emphasizing that healthcare should be treated as a human right guaranteed to all.

Alexander highlighted the importance of change at every level: from ensuring healthcare providers engage in continuous education to confront biases toward patients with hard-to-diagnose conditions, to building communities and physical environments that empower young adults to reach their highest potential regardless of medical condition, financial status, race, sex, gender, sexuality, or ability.

“I really think that people with firsthand experience have the knowledge to create the most meaningful change.” During our recent town hall on Advancing Systems Change for Young Adults with Chronic and Rare Conditions, young adult patient advocate Peyton Miles shares why young adult patients must be at thee forefront of the conversation when addressing systemic issues within the healthcare system.

The full town hall is now available on our YouTube channel! Thank you to the Lucile Packard Foundation for Children’s Health for their support of this roundtable project. For more information, visit generationpatient.org/roundtables

Thank you to The Greenwall Foundation for profiling our work to equip congressional staff with evidence-based tools for ethically and effectively engaging with patient advocacy groups!

As a recipient of the Foundation's 2025 Bridging Bioethics and Research & Policymaking Grant, Generation Patient is working to empower independent patient advocacy to drive meaningful health policy reform. Since beginning our work under this grant, we have developed educational materials that break down the importance of independent patient advocacy and the risks of out-sized industry influence, shared case studies for demonstrating how industry influence in policymaking can play out and impact patients, and created a guide for vetting a patient organization's independence from industry influence.

We are grateful for The Greenwall Foundation's support of our work and commitment to empowering independent patient advocacy.

Patents affect when young adult patients access the medications they need and at what price. Drug companies are increasingly using anticompetitive gamesmanship to build patent thickets and delay affordable access for American patients. Terminal disclaimers now appear on nearly 70 percent of new Orange Book drug patents, up from 36 percent two decades ago. These patents are routinely asserted in court to delay generic competition.

Read the Generation Patient report on how patent thickets delay access to affordable medicines for young adult patients: https://generationpatient.org/blog/patent-thickets or at the link in our bio.

The Eliminating Thickets to Increase Competition (ETHIC) Act (S. 2276 / H.R. 3269) is a bipartisan, narrowly tailored response to a problem clearly grounded in data and patient experiences. The evidence shows why Congress should pass it.

Chronic illness can feel incredibly isolating, especially when the people around you don't quite understand what you're going through.

There's where peer support comes in.

It helps young adults navigate unpredictability, find connection in the middle of it, and hold onto hope when it feels out of reach.

Check out our website (or the link in our bio) to sign up for a meeting this month.

Chronic illness can feel incredibly isolating, especially when the people around you don't quite understand what you're going through.

There's where peer support comes in.

It helps young adults navigate unpredictability, find connection in the middle of it, and hold onto hope when it feels out of reach.

Check out our website (or the link in our bio) to sign up for a meeting this month.

Chronic illness can feel incredibly isolating, especially when the people around you don't quite understand what you're going through.

There's where peer support comes in.

It helps young adults navigate unpredictability, find connection in the middle of it, and hold onto hope when it feels out of reach.

Check out our website (or the link in our bio) to sign up for a meeting this month.

Join one of our Peer Support Groups this month! We offer 6 to 8 peer-run groups each month for young adults with chronic conditions 💜

Swipe for a description of each peer support group. Head to the link in our bio or http://generationpatient.org/virtual-meetings to register!

Join one of our Peer Support Groups this month! We offer 6 to 8 peer-run groups each month for young adults with chronic conditions 💜

Swipe for a description of each peer support group. Head to the link in our bio or http://generationpatient.org/virtual-meetings to register!

Join one of our Peer Support Groups this month! We offer 6 to 8 peer-run groups each month for young adults with chronic conditions 💜

Swipe for a description of each peer support group. Head to the link in our bio or http://generationpatient.org/virtual-meetings to register!

Join one of our Peer Support Groups this month! We offer 6 to 8 peer-run groups each month for young adults with chronic conditions 💜

Swipe for a description of each peer support group. Head to the link in our bio or http://generationpatient.org/virtual-meetings to register!

Join one of our Peer Support Groups this month! We offer 6 to 8 peer-run groups each month for young adults with chronic conditions 💜

Swipe for a description of each peer support group. Head to the link in our bio or http://generationpatient.org/virtual-meetings to register!

As we transition into the warmer months, listen to what your body needs and be gentle with yourself. ☀️

For many of us living with chronic and rare conditions, heat can feel uncomfortable, trigger flares, fatigue, and symptoms that demand you slow down whether you planned to or not. And that's okay. 🤍

Sometimes care looks like laying down, drinking water, and avoiding the sun if you can. Give yourself permission to do less this season.