Folia Health Launches Caregiver Study for Prader-Willi Syndrome

The BRAVE-PWS study aims to better understand the real-world experiences of caregivers supporting individuals with Prader-Willi syndrome.

Apr. 15, 2026 at 2:00pm

Got story updates? Submit your updates here. ›

An extreme close-up X-ray image of a human brain, with the intricate neural structures visible as glowing, ghostly lines against a dark background, conceptually representing the complex neurological aspects of Prader-Willi syndrome.A groundbreaking study aims to shed light on the daily challenges faced by caregivers supporting individuals with the rare neurological disorder Prader-Willi syndrome.Boston Today

Folia Health, a patient-led health company, has launched the Burden and Real-world Assessment of Caregiver Voice and Experiences in Prader-Willi syndrome (BRAVE-PWS) study. The fully remote observational study, sponsored by Soleno Therapeutics, is designed to collect longitudinal, real-world data directly from caregivers of individuals with Prader-Willi syndrome (PWS) to better understand the day-to-day challenges they face.

Why it matters

PWS is a rare neurodevelopmental disorder that significantly impacts the entire family, including caregivers. Managing the condition's symptoms, such as hyperphagia and behavioral challenges, often requires constant supervision and structured routines, creating substantial demands on caregivers. The BRAVE-PWS study aims to address the evidence gap in understanding the real-world experiences of PWS caregivers.

The details

The BRAVE-PWS study will use Folia's app-based platform to collect Home-Reported Outcomes (HROs) and longitudinal caregiver-reported data over six months. Participants will track weekly updates about their own well-being and the symptoms and behaviors of the individual with PWS in their care. This data will help researchers characterize the day-to-day experience associated with PWS and identify the factors that most affect caregiver well-being and household functioning.

  • The BRAVE-PWS study launched on April 15, 2026.
  • The study will collect data from caregivers over a six-month period.

The players

Folia Health

A patient-led health company and the pioneer of home-reported outcomes (HROs), transforming lived health experiences into valuable structured data insights to advance research and personalized care.

Soleno Therapeutics

The sponsor of the BRAVE-PWS study, a NASDAQ-listed company focused on the development and commercialization of novel therapeutics for the treatment of rare diseases.

Nell Meosky Luo

The CEO and Founder of Folia Health, who stated that the BRAVE-PWS study will provide first-hand information on caregivers' experiences that may inform future research, clinical care strategies, and the evaluation of emerging treatments for PWS.

Got photos? Submit your photos here. ›

What they’re saying

“Pragmatic measurement is an important key to drug development that can provide insight into the needs of individuals living with rare diseases, such as PWS. PWS impacts the entire family, including caregivers. The BRAVE-PWS study will give us first-hand information on caregivers' experiences that may inform future research, clinical care strategies, and the evaluation of emerging treatments for PWS.”

— Nell Meosky Luo, CEO and Founder of Folia Health

What’s next

The study aims to enroll caregivers of individuals with PWS across the United States. All study activities, including screening, consent, and data collection, are completed through the Folia mobile app, allowing families to participate from home without clinic visits.

The takeaway

The BRAVE-PWS study represents an important effort to better understand the real-world challenges faced by caregivers of individuals with Prader-Willi syndrome, a rare and complex condition that significantly impacts families. By collecting longitudinal, patient-reported data, the study aims to inform future research, clinical care, and the development of new treatments.