FPWR Blog

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PWS Registry Data: Skin Picking in PWS [INFOGRAPHIC]
Individuals with PWS often exhibit a variety of self-injurious behaviors, and one of the most... Read more >
Source: FPWR Blog | Published: April 4 2024 - 08:45 AM
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Sleep and Schaaf-Yang Syndrome [2023 CONFERENCE VIDEO]
In this 74‑minute video, Dr. Joanna Wrede, a pediatric sleep neurologist at Seattle Children’s... Read more >
Source: FPWR Blog | Published: April 4 2024 - 08:45 AM
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Harmony Biosciences Initiates Global Phase 3 Study of Pitolisant: TEMPO!
Harmony Biosciences has initiated its Phase 3 study of Pitolisant and is now enrolling individuals... Read more >
Source: FPWR Blog | Published: April 4 2024 - 07:36 AM
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PWS Clinical Trial Webinar: NNZ-2591
Neuren Pharmaceuticals is now enrolling children with PWS in a phase 2 clinical trial to measure... Read more >
Source: FPWR Blog | Published: March 3 2024 - 08:30 AM
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Top 10 Reasons to Attend the 2024 FPWR Family Conference
Join us September 27–28 for our annual gathering of movers, shakers, thinkers, and doers at this... Read more >
Source: FPWR Blog | Published: March 3 2024 - 08:45 AM
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Behavior and Mental Health - Age 5 and Up [2023 CONFERENCE VIDEO]
In this 30‑minute video, Patrice Carroll, Elizabeth Roof, and Dr. Deepan Singh discuss strategies... Read more >
Source: FPWR Blog | Published: March 3 2024 - 08:30 AM
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Learning from Every Patient: The PWS-CLIC Starts a Shared Database
The PWS-Clinical Investigation Collaborative (PWS-CLIC) is a network of PWS clinical experts,... Read more >
Source: FPWR Blog | Published: March 3 2024 - 08:45 AM
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What Is the PWS CLIC [2023 Conference Video]
In this 10‑minute video, Caroline Vrana-Diaz, FPWR Research Project Coordinator, explains how the... Read more >
Source: FPWR Blog | Published: March 3 2024 - 08:30 AM
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Understanding the Impact of Schaaf-Yang Syndrome from Caregiver Insights
Schaaf-Yang syndrome (SYS) is an ultra-rare disorder that was first identified in 2013. It is... Read more >
Source: FPWR Blog | Published: February 2 2024 - 08:30 AM
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Share Your Rare: HopeFull Highlights
As Rare Disease Day approaches on February 29, we want to spotlight the extraordinary qualities of... Read more >
Source: FPWR Blog | Published: February 2 2024 - 08:30 AM
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Schaaf-Yang Syndrome Update with Dr. Schaaf [2023 Conference Video]
In this 85‑minute video, Dr. Christian Schaaf, medical director and department chair at the... Read more >
Source: FPWR Blog | Published: February 2 2024 - 09:30 AM
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Feeding Tube Use and Complications in Babies With PWS
A paper has just been published that provides new insight into the use of feeding tubes in babies... Read more >
Source: FPWR Blog | Published: February 2 2024 - 12:45 PM
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New Research into the Sense of Smell in PWS
It is well established in science as well as culture that the smell of food is linked to appetite,... Read more >
Source: FPWR Blog | Published: January 1 2024 - 09:15 AM
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Standards of Care for People with PWS Ages 3-9 [2023 Conference Video]
In this one-hour and 2‑minute video, Dr. Parisa Salehi, a Pediatric Endocrinologist at Seattle... Read more >
Source: FPWR Blog | Published: January 1 2024 - 11:00 AM
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