Prader-Willi syndrome Archives

Rare Community Profiles: Kristi’s Fight to Combat Misconceptions about Prader-Willi Syndrome (PWS): “Our Children Have PWS; They Are Not PWS”

Post author:Jessica Lynn
Post published:April 9, 2024
Post category:Prader-Willi Syndrome

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

Pitolisant for Prader-Willi Syndrome (PWS) Earns Orphan Drug Designation

Post author:Jessica Lynn
Post published:March 14, 2024
Post category:Prader-Willi Syndrome

Prader-Willi syndrome (PWS) is a rare genetic disorder with a number of physical, emotional, mental, and behavioral manifestations. Individuals with PWS may exhibit cognitive impairment, hypotonia (poor muscle tone), and…

source: shutterstock.com

The Case for Taking Patient and Caregiver Insights Seriously

Post author:Patient Worthy Contributor
Post published:February 12, 2024
Post category:Prader-Willi Syndrome

Written by Maria Picone, TREND Community Ten years ago, my daughter was born with a rare, complex disease known as Prader-Willi syndrome (PWS). PWS is best known for causing insatiable…

source: shutterstock.com

May is Prader-Willi Syndrome Awareness Month: Spreading Rare Disease Awareness

Post author:James Moore
Post published:May 26, 2023
Post category:Prader-Willi Syndrome

The month of May is recognized as Prader-Willi Syndrome (PWS) Awareness Month, and May 27th is International PWS Day. This is a time to spread awareness about this rare disease…

Photo courtesy of Dr. Seth Lederman

How Tonix is Working to Change the Prader-Willi Syndrome (PWS) Treatment Landscape: A Discussion with Dr. Seth Lederman

Post author:Jessica Lynn
Post published:February 23, 2023
Post category:Prader-Willi Syndrome

Dr. Seth Lederman founded Tonix Pharmaceuticals with a deep desire to change the treatment landscape for patients. The company’s rich pipeline features therapeutic options for fibromyalgia, post-traumatic stress disorder (PTSD),…

emrahozaras / Pixabay

Experimental Therapy Shows Promise for Excessive Sleepiness in Prader-Willi Syndrome

Post author:James Moore
Post published:November 9, 2022
Post category:Prader-Willi Syndrome

According to a story from prnewswire.com, the pharma company Harmony Biosciences Holdings, Inc., has recently announced the release of data from its phase 2 clinical trial. This trial is evaluating…

source: pixabay.com

First Hyperphagia Treatment for Prader-Willi Syndrome Moves to Phase 2b Trial

Post author:Trudy Horsting
Post published:January 14, 2022
Post category:Prader-Willi Syndrome

Saniona has just announced that their Phase 2b clinical trial examining Tesomet as a treatment for Prader-Willi syndrome (PWS) will be beginning soon. This treatment is a combination therapy which…

source: pixabay.com

Virtual Turkey Trot Raises Prader-Willi Syndrome Awareness

Post author:Jessica Lynn
Post published:October 25, 2021
Post category:Prader-Willi Syndrome

Every year, there are numerous unique ways to get involved in the rare disease community and help raise awareness. One example? The Harvest Hope for PWS event -- a virtual…

Unsplash: https://unsplash.com/photos/58Z17lnVS4U

tDCS Can Suppress Appetite in PWS

Post author:Jessica Lynn
Post published:May 10, 2021
Post category:Prader-Willi Syndrome

Hyperphagia, or an abnormally stronger hunger or desire to eat, is one of the characteristics of Prader-Willi syndrome (PWS), a rare genetic disorder. Because of this, patients with PWS often…

Unsplash: https://unsplash.com/photos/g51F6-WYzyU

Bladder Dysfunction Common in Pediatric Patients with PWS

Post author:Jessica Lynn
Post published:May 7, 2021
Post category:Prader-Willi Syndrome

There are many reasons why medical research is important. It helps to amplify the patient voice, improve disease-related knowledge, and determine potential treatment goals. Additionally, medical research provides insight into…

source: pixabay.com

A New Collaboration Will Support Research of Prader-Willi Syndrome and Other Rare Diseases

Post author:Trudy Horsting
Post published:March 9, 2021
Post category:Prader-Willi Syndrome

Vanderbilt University has just announced a new collaborative agreement with Soleno Therapeutics in aim to develop KATP channel activators as a therapeutic for rare diseases. This therapy has already been…

PhotoLizM / Pixabay

Technology to Treat Prader-Willi Syndrome Has Been Licensed by Tonix Pharmaceuticals

Post author:Kendall Mason
Post published:February 23, 2021
Post category:Prader-Willi Syndrome

Tonix Pharmaceuticals and Inserm, which is the French National Institute of Health and Medical Research, have entered into a licensing agreement in which Tonix will hold the license to oxytocin-based…

source: pixabay.com

Soleno Hosts Webinar on Prader-Willi Syndrome DCCR Treatment Data

Post author:James Moore
Post published:February 12, 2021
Post category:Prader-Willi Syndrome

According to a story from GlobeNewswire, the biopharmaceutical company Soleno Therapeutics, Inc. recently hosted a Key Opinion Leader (KOL) webinar, which was focused primarily on the latest updates to its…

source: pixabay.com

Webinar: The Treatment of Prader-Willi Syndrome

Post author:Kendall Mason
Post published:February 3, 2021
Post category:Prader-Willi Syndrome

Soleno Therapeutics has announced that they will be hosting a Key Opinion Leader (KOL) webinar on Thursday, February 4 at noon EST. This webinar will focus on Prader-Willi syndrome, specifically…

source: pixabay.com

Does This Protein Play a Role in Prader-Willi Syndrome?

Post author:James Moore
Post published:January 4, 2021
Post category:Prader-Willi Syndrome

According to a story from BioNews, a recent study has revealed more information about the maternal protein SMCHD1, and impacts to the normal function of this protein could play a…

source: pixabay.com

NORD Webinar Gives Insight Into Starting a Nonprofit and Patient Registry

Post author:Jessica Lynn
Post published:December 21, 2020
Post category:Prader-Willi Syndrome Rare Disease

Just around a month ago, the National Organization for Rare Disorders (NORD) offered a webinar on how to create a patient registry or start a nonprofit organization. NORD's webinar, part…

jcvelis / Pixabay

CARE-PWS Results Announced on LV-101 for Prader-Willi Syndrome

Post author:Jessica Lynn
Post published:August 11, 2020
Post category:Prader-Willi Syndrome

Within the last week, biotechnology company Levo Therapeutics announced results from the Phase 3 CARE-PWS clinical trial. During the trial, researchers examined the efficacy, safety, and tolerability of LV-101…

source: pixabay.com

Prader-Willi Syndrome: The Future Looks Promising, Expert Claims

Post author:James Moore
Post published:April 30, 2020
Post category:Prader-Willi Syndrome Rare Disease

In an interview with Healio, Dr. Jennifer Miller says that there are signs of hope for improved outcomes in patients living with Prader-Willi syndrome, a rare genetic disorder. Dr. Miller…

source: pixabay.com

Phase 2b Prader-Willi Syndrome Trial Ends in Disappointment

Post author:James Moore
Post published:April 13, 2020
Post category:Congenital Adrenal Hyperplasia Prader-Willi Syndrome

According to a story from Malvern Daily Record, the biopharmaceutical company Millendo Therapeutics, Inc. recently released data from its phase 2b clinical trial. This study was testing the company's experimental…

source: pixabay.com

Could This Experimental Drug Treat Extreme Hunger in Prader-Willi Syndrome?

Post author:James Moore
Post published:January 20, 2020
Post category:Prader-Willi Syndrome

According to a story from labblog.uofmhealth.org, one of the defining features of Prader-Willi syndrome, a rare disorder, is hyperphagia, which is extreme overeating and obsession with food. While this is…

Source; Pexels.com

New Drug Aims to Treat Hyperphagia in Those with Prader-Willi Syndrome

Post author:Kendall Mason
Post published:January 15, 2020
Post category:Prader-Willi Syndrome

Hyperphagia is an extreme hunger and obsession with food, and it is a symptom of Prader-Willi syndrome. While many of the other effects of this condition have treatments, this…

source: pixabay.com

Video of Twin Comforting her Sister Diagnosed with Rare Prader-Willi Syndrome

Post author:Octavia Walker
Post published:September 26, 2019
Post category:Prader-Willi Syndrome

Although even a regular video of twin baby girls snuggling can be engaging and cute, there are two twin girls in the UK whose bond will warn your heart.…

geralt / Pixabay

Updates on Phase 3 Prader-Willi Syndrome Trial Indicate Positive Results so Far

Post author:James Moore
Post published:August 2, 2019
Post category:Prader-Willi Syndrome

According to a story from Financial Buzz, the biopharmaceutical company Soleno Therapeutics recently provided an update on the progress of the Company's Phase 3 clinical trial. This trial is evaluating…

source: pixabay.com

A New Drug With the Potential to Treat Hypothalamic Obesity

Post author:Rose Duesterwald
Post published:March 15, 2019
Post category:Prader-Willi Syndrome

According to a recent article in the Globe, the Danish biotech company Saniona AB has initiated a Phase 2a clinical trial of Tesomet for the treatment of hypothalamic obesity, a rare…

Matvevna / Pixabay

Company Releases Latest Updates in Prader-Willi Syndrome Clinical Trial

Post author:James Moore
Post published:March 2, 2019
Post category:Prader-Willi Syndrome

According to a story from BioPortfolio, the biotechnology company Saniona has released an update in regards to the company's Phase 2a clinical trial of Tesomet, which is being tested as…

Rare Community Profiles: Kristi’s Fight to Combat Misconceptions about Prader-Willi Syndrome (PWS): “Our Children Have PWS; They Are Not PWS”

Pitolisant for Prader-Willi Syndrome (PWS) Earns Orphan Drug Designation

The Case for Taking Patient and Caregiver Insights Seriously

May is Prader-Willi Syndrome Awareness Month: Spreading Rare Disease Awareness

How Tonix is Working to Change the Prader-Willi Syndrome (PWS) Treatment Landscape: A Discussion with Dr. Seth Lederman

Experimental Therapy Shows Promise for Excessive Sleepiness in Prader-Willi Syndrome

First Hyperphagia Treatment for Prader-Willi Syndrome Moves to Phase 2b Trial

Virtual Turkey Trot Raises Prader-Willi Syndrome Awareness

tDCS Can Suppress Appetite in PWS

Bladder Dysfunction Common in Pediatric Patients with PWS

A New Collaboration Will Support Research of Prader-Willi Syndrome and Other Rare Diseases

Technology to Treat Prader-Willi Syndrome Has Been Licensed by Tonix Pharmaceuticals

Soleno Hosts Webinar on Prader-Willi Syndrome DCCR Treatment Data

Webinar: The Treatment of Prader-Willi Syndrome

Does This Protein Play a Role in Prader-Willi Syndrome?

NORD Webinar Gives Insight Into Starting a Nonprofit and Patient Registry

CARE-PWS Results Announced on LV-101 for Prader-Willi Syndrome

Prader-Willi Syndrome: The Future Looks Promising, Expert Claims

Phase 2b Prader-Willi Syndrome Trial Ends in Disappointment

Could This Experimental Drug Treat Extreme Hunger in Prader-Willi Syndrome?

New Drug Aims to Treat Hyperphagia in Those with Prader-Willi Syndrome

Video of Twin Comforting her Sister Diagnosed with Rare Prader-Willi Syndrome

Updates on Phase 3 Prader-Willi Syndrome Trial Indicate Positive Results so Far

A New Drug With the Potential to Treat Hypothalamic Obesity

Company Releases Latest Updates in Prader-Willi Syndrome Clinical Trial

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story

Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes

We Need Equity and Diversity Within Rare Disease Research

DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1

Bridging the Diversity Gap in Healthcare

Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

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