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Find Your Patient Voice

Our research collaborations seek to foster authentic partnerships between young patients and healthcare providers. To learn more about our research projects, click here. For patient-centered resources that break down research and healthcare, click here.

Our Stories

The Invisible Weight: Mental Health and Chronic Illness

Nick Mertens July 2, 2026

Making it Work During the Week: Meal Prep with Chronic Illness

Kelsey Schneider June 17, 2026

Destigmatizing Mental Health Through Creative Mediums

Ela Chintagunta April 7, 2026

Science is Hope

Courtney Wells March 30, 2026

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We are the Young Patients' Autoimmune Research and Empowerment Alliance- trained patient partners making research inclusive for young adults like us.

Research that includes patients is top-tier> #Lupu

Research that includes patients is top-tier> #Lupus #LupusWarrior #Autoimmune #Spoonie #Research

Singh et al (2018) found that compared to a paper

Singh et al (2018) found that compared to a paper pamphlet, the MyLupus app helped patients feel more informed about their treatment options and more confident that their medication choice aligned with their values.Have you used a decision aid to guide a conversation with your doctor about your treatment?#Lupus #LupusWarrior #Autoimmune

For decades, doctor's appointments average 15-21 m

For decades, doctor's appointments average 15-21 minutes long (Tai-Seale et al. 2007; Neprash et al. 2023; Porter et al. 2023).Even though admin tasks and medical diagnoses have gotten way more complex, the health system still gives us the exact same amount of time.This hits hard for both doctors and patients. How do you get your questions answered?#Healthcare #WWYDW #AutoImmuneDisease #Spoonie

Choosing a lupus treatment can be overwhelming—but

Choosing a lupus treatment can be overwhelming—but research can help us have better conversations with our doctors.Researcher and rheumatologist Dr. Singh led the development of the MyLupus decision aid, a research-backed tool designed to support informed treatment decisions based on what matters most to each person. (Singh et al, 2019)#LupusAwareness #Lupus #ChronicIllness #Research #Spoonie

Did you forget something when going back to school

Did you forget something when going back to school shopping? Help us out by downloading ShopRaise! Where Your Support Goes:You're helping build something that didn't exist before: a movement that puts young patients at the center of autoimmune research. This requires real infrastructureand support.Examples of our expenses:• Support for each young patient leader: $200+ /month• Coverage to collaborate with researchers: $250 /month• Keeping our website online: $300 /year• Scientific conference registration: $400-1250 /person• Publishing research anyone can access: $4,610 /paper• Research ethics review: $5000 /study #AutoImmune #Research #ShopRaise #Spoonie #Fundraise

Are you struggling to meal prep? Then check out ou

Are you struggling to meal prep? Then check out our new blog post about easy recipes to fuel your body during the busy season! #MealPrep #ChronicIllness #AutoImmuneDisease #Meals #Snacks #Foods #Spoonie

Council Member Chaylee was on a podcast called Lit

Council Member Chaylee was on a podcast called Literary Blend! On the pod, she talked about tips and tricks for writing when sick, the importance of own-voice stories, and more! To listen, visit the link in our bio under the podcast features tab. #Sicklit #ChronicallyIllWriters #AutoImmuneDisease #Creative #Research

Preparing and making meals can seem impossible whe

Preparing and making meals can seem impossible when you have a chronic illness and have other responsibilities such as school, work, and family obligations. But don't worry! We've got you. Check out our most recent blog post on easy-to-make meals to fuel your body! It's also important to make sure to work with your own doctors and/or dietitian to ensure your food choices align with your individual needs! #MealPrep #ChronicIllness #AutoImmuneDisease #Meals #Snacks #Foods #Spoonie

If you missed our event, don't worry! The recordin

If you missed our event, don't worry! The recording is up on YouTube, and you can connect with Lya's mission by following @crypricwings_ #Spoonie #ChronicIllness #Research #Lupus #LupusAwareness #AutoImmuneDisease

NEW BLOG POST. Previous Council Member Nick opens

NEW BLOG POST. Previous Council Member Nick opens up about his experience with managing his mental health while having an autoimmune condition. Link in bio! #MentalHealthMatters #Spoonie #ChronicIllness #HealthCare #AutoImmune #MentalHealth

Thanks for attending our event the other day! Stay

Thanks for attending our event the other day! Stay tuned for more information on lupus and navigating treatment options! #Spoonie #ChronicIllness #Research #Lupus #LupusAwareness #AutoImmuneDisease

Here is Chaylee's last Sick Lit Summer book rec! S

Here is Chaylee's last Sick Lit Summer book rec! Swipe for a bonus book! Did you complete the challenge and read 3 books? If so, comment below! #SickLit #Summerreading #Chronicillness #AutoImmuneDisease #Spoonie

Do you have lupus and are uncertain about your tre

Do you have lupus and are uncertain about your treatment options? Then join us to learn about shared decision-making, tips for navigating health information and treatment, and resources to help you. #Spoonie #ChronicIllness #Research #Lupus #LupusAwareness #AutoImmuneDisease

Meet Lya, founder of Cryptic Wings and our Guest S

Meet Lya, founder of Cryptic Wings and our Guest Speaker for My Lupus, My Voice! You do not want to miss this event on Wednesday, July 22nd! Link in bio! @crypticwings_ #Spoonie #ChronicIllness #Research #Lupus #LupusAwareness #AutoImmuneDisease

Register for "My Lupus, My Voice" to learn more ab

Register for "My Lupus, My Voice" to learn more about Lupus, and hear from people like you. #Spoonie #ChronicIllness #Research #Lupus #LupusAwareness #AutoImmuneDisease

It's July, which means Chaylee is reading more sum

It's July, which means Chaylee is reading more summer books with disability rep. This week she read If You Were Here by Abigail Johnson. #SickLit #Summerreading #Chronicillness #AutoImmuneDisease #Spoonie

Are you frustrated by poor healthcare experiences

Are you frustrated by poor healthcare experiences and tired of facing them alone? We want to help. During this event, we will discuss shared decision-making, tips for navigating health information and treatment, and resources to help people with lupus learn about their disease and treatment options. We want to help you, and we want to hear your voice. #Spoonie #ChronicIllness #Research #Lupus #LupusAwareness #AutoImmuneDisease

We are so excited to announce our next event, "My

We are so excited to announce our next event, "My Lupus, My Voice!" Register now using the link in our bio and stay tuned to learn more about the event and our guest speaker! #Spoonie #ChronicIllness #Research #Lupus #LupusAwareness #AutoImmuneDisease

Uh-oh! Summer can present unexpected challenges wh

Uh-oh! Summer can present unexpected challenges when it comes to traveling and refills for your medications. What would you do in this situation? #ChronicIllnes #Spoonie #AutoImmuneDisease #WWYDW #Research #YoungPatients

Happy Pride Month from Young Patients' AREA! Over

Happy Pride Month from Young Patients' AREA! Over the years, we have made many posts and blogs highlighting the importance of celebrating all identities. Here are a few of our best! #ChronicIlness #Pride #PrideMonth #AutoImunne #LGBTQ #Reserach #HappyPride

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