A quote on a blue background with a large quotation mark. The text reads: "My workshop brought an important issue to the forefront of our attention: Given the constant effort required to keep our children safe, how can we celebrate our children’s strengths?" Emily Felt, PWS Contributor.

💛 Our Children’s Strengths Are Real, but PWS Makes Them Harder to See

Emily Felt, caregiver to a daughter with #PraderWilliSyndrome, shares insights from a workshop she led on recognizing the unique strengths of children with special needs.

Read here: https://bit.ly/48kL0pm

#praderwillisyndrome

Candice Leeann Caffas – The Charley Project Caffas, circa 2022

Candice Cafface #disappeared from her neighborhood in Pennsylvania. She has #PraderWilliSyndrome and has the mental capabilities of a ten- to twelve-year-old. #CharleyProject

Have you heard of Prader-Willi Syndrome?
"Prader-Willi syndrome (PWS) is a rare genetic disorder characterized by chronic hunger, growth hormone deficiency, and behavior challenges."
#praderwillisyndrome #PWS #raredisease #rarediseases #chronicillness

Pharmacogenomic Testing Can Build Caregiver Confidence in PWS Pharmacogenomic testing in PWS rarely changed medications but increased caregiver confidence for future prescribing.

Pharmacogenomic (#PGx) testing was perceived as valuable by caregivers of individuals with Prader-Willi syndrome (#PWS), primarily for informing future medication decisions. Study in Pharmacogenomics.

Read more: https://bit.ly/4bm3tnT

#RareDisease #PraderWilliSyndrome #MedSky

DCCR Sustains Durable Hyperphagia Control in Prader-Willi Syndrome Continued DCCR significantly limited hyperphagia worsening vs withdrawal of DCCR and placebo initiation in Prader-Willi Syndrome (PWS).

Continued #DCCR significantly limited #Hyperphagia worsening vs withdrawal of DCCR and placebo initiation in Prader-Willi Syndrome (#PWS). Study in @endosocjournals.bsky.social @endocrinesociety.bsky.social

Read more: https://bit.ly/3Zj11Y2

#RareDisease #PraderWilliSyndrome #Endocrinology

Heartbreak for Katie Price as Harvey smashes iPads and windows as she moves him house Katie Price has candidly detailed the tough week she's had with son Harvey as he went back to his te

Katie Price opens up about tough week with son Harvey as he struggles with new accommodation while waiting for new home #Autism #PraderWilliSyndrome

opr.news/5cdad4cd260122en_gb

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Day 2 of BSPED conference here in Sheffield.

Drop by to see us and our fellow patient support groups to find out more about our resources for your patients.

#BSPED2025 @pituitaryorg.bsky.social #cahfoundation #praderwillisyndrome #thyroid #PaediatricEndocrinology

Emily Felt, PWS Contributor and mom to a 13-year-old with #PWS, shares how she’s found strength and joy in her caregiving journey.

Read more ➡️ https://bit.ly/47UzjVC

#PraderWilliSyndrome #PWS #RareDisease #Caregiver

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We’re pleased to share our new bioRxiv preprint:
“The Pre-clinical Animal Network (PCAN)...t”
www.biorxiv.org/content/10.1...

#PraderWilliSyndrome #MouseGenetics #Phenotyping #FPWR #TranslationalResearch #OpenScience #DigitalTwin #IMPC #INFRAFRONTIER #MRC #RareDisease

Remote genome sequencing study for rare disease? A fully remote, patient-led #genomesequencing study proves feasibility and impact, empowering families with actionable results and genetic insights. bit.ly/46nyncu #GIMO #PraderWilliSyndrome #Pharmacogenomics

Diazoxide Choline Extended-Release Safe for Hyperphagia in Prader-Willi Syndrome Diazoxide choline extended-release tablets demonstrated favorable safety profile across 4 years among patients with Prader-Willi Syndrome.

From #ENDO2025: Diazoxide choline extended-release tablets for #hyperphagia demonstrated favorable #glycemic safety across 4 years among patients with #PraderWilliSyndrome

@endocrinesociety.bsky.social @nationwidekids.bsky.social @seattlechildrens.org

As May Prader-Willi Syndrome Awareness Month winds down,its important to understand these children and adolescents growing into adulthood to provide effective care #PraderWilliSyndrome #raredisease

Today is Go Orange for #PraderWilliSyndrome Day! My child has PWS. The brain is locked in a kind of starvation mode so people with PWS always feel hungry, and so it causes obesity unless carefully managed.

🧡 Orange for a Cause 🧡

Yesterday we all wore orange to raise awareness for Prader-Willi Syndrome, a rare genetic condition that deserves more recognition and support.

We’re proud to share that we raised over £100 for the charity!

#PraderWilliSyndrome #Awareness #TeamOrange #FundraisingForGood

Impressed and thankful that @zoedaniel.bsky.social came to the #PraderWilliSyndrome #Finding15 walk this morning- a small community event on a very busy weekend for her! 🙏🏼

JCI Insight - Investigation of a mouse model of Prader-Willi syndrome with combined disruption of Necdin and Magel2

Novel mouse model for #PraderWilliSyndrome... 🐭🧠🧬

insight.jci.org/articles/vie...

The #FDA has approved Carbetocin, the first treatment for #PraderWilliSyndrome, a rare genetic disorder affecting appetite, growth, and development. This drug provides new hope for #families affected by PWS, marking a significant advancement in rare #disease treatment and support.

Learn more about the newly approved treatment for hyperphagia in patients with Prader-Willi syndrome with Dr. Ashley Shoemaker.

checkrare.com/first-treatm...

#CheckRare #RareDisease #FDAApproval #PraderWilliSyndrome #RareGenetic

Research Opportunity - Seattle Children's is studying tirzepatide in young adults (18–26) with #PraderWilliSyndrome and #HypothalamicObesity.

For information, contact EndocrineResearch@seattlechildrens.org | 206-987-2540

Progress for controlling hunger in #Praderwillisyndrome www.investors.com/news/technol...

FDA clears first treatment for Prader-Willi syndrome Soleno Therapeutics' Vykat XR has become the first FDA-approved treatment for excessive eating in rare disorder Prader-Willi syndrome.

NEWS: #SolenoTherapeutics' #VykatXR has become the first FDA-approved treatment for #PraderWillisyndrome (PWS), a rare #geneticdisorder that causes excessive appetite and obesity.

pharmaphorum.com/news/fda-cle...

US FDA approves first treatment for rare genetic disorder Prader-Willi syndrome Blog Mobile Portfolio Widgets About Us Advertise Help & Support Authors Risk Disclosure: Trading in financial instruments and/or cryptocurrencies involves high risks including the risk of losing some, or all, of your investment amount, and may not be suitable for all investors. Prices of cryptocurrencies are extremely volatile and may be affected by external factors such as financial, regulatory or political events. Trading on margin increases the financial risks. Before deciding to trade in financial instrument or cryptocurrencies you should be fully informed of the risks and costs associated with trading the financial markets, carefully consider your investment objectives, level of experience, and risk appetite, and seek professional advice where needed. Fusion Media would like to remind you that the data contained in this website is not necessarily real-time nor accurate. The data and prices on the website are not necessarily provided by any market or exchange, but may be provided by market makers, and so prices may not be accurate and may differ from the actual price at any given market, meaning prices are indicative and not appropriate for trading purposes. Fusion Media and any provider of the data contained in this website will not accept liability for any loss or damage as a result of your trading, or your reliance on the information contained within this website. It is prohibited to use, store, reproduce, display, modify, transmit or distribute the data contained in this website without the explicit prior written permission of Fusion Media and/or the data provider. All intellectual property rights are reserved by the providers and/or the exchange providing the data contained in this website. Fusion Media may be compensated by the advertisers that appear on the website, based on your interaction with the advertisements or advertisers.

Click Subscribe #PraderWilliSyndrome #FDAApproval #GeneticDisorder #Healthcare #MedicalBreakthrough

Kelly Guillo, Board Member of the Prader-Willi Syndrome Association in Georgia, discusses Prader-Willi syndrome (PWS) from the perspective of a caregiver.

checkrare.com/prader-willi...

#CheckRare #PraderWilliSyndrome #RareGenetic #RareEndocrine

Also for #RareDiseaseDay, we hosted a screening of the documentary "The Life You're Given." Both deeply sympathetic to its subject Sophie and unflinching when it came to the behavioral management of #PraderWilliSyndrome. Members of GA chapter of PWS Foundation were able to join us!

The Effects of Bilingualism on the Executive Control Abilities of the Prader-Willi Syndrome Population - Journal of Psycholinguistic Research Unlike with the typically developing population, non-typically developing individuals, especially those with intellectual disabilities, have usually been recommended to learn and use only one language...

📢📢
Recent publication with Juana Liceras investigating the effects of #bilingualism on the #executivecontrol abilities of bilinguals with #PraderWilliSyndrome. This study is in line with previous research in not showing a detrimental effect of bilingualism.
👉 link.springer.com/article/10.1...

Emotional regulation in folks with PWS with Dr. Kacey Bedard

www.behaviourspeak.com/e/behavior-a...

@pwsausa

#praderwillisyndrome #praderwilli #praderwillisyndromeawareness #emotionalregulation #emotionalregulationskills #behavioranalysis #appliedbehavioranalysis #bcba

JCI Insight - Investigation of a mouse model of Prader-Willi syndrome with combined disruption of Necdin and Magel2

Excited to share our latest collaborative study with Françoise Muscatelli! 🎉

We characterized a new #PraderWilliSyndrome mouse model with combined deletion of Magel2 & Necdin 🧬

Huge thanks to FPWR for supporting this work!

Histogram from our paper showing Anxiety scores among parents of people with PWS. 67.4% of parents exhibited ‘abnormal’ levels of anxiety, and 15.6% exhibited ‘borderline abnormal’ levels of anxiety. Only 19.7% were in the 'normal' range. The sample size was 135 parents, drawn from 31 countries.

Extract from our paper: "3.3.1 PTSD Symptom Prevalence in Siblings We used the CATS-C to assess PTSD symptoms in siblings, which enabled us to assess level of PTSD symptoms based on DSM-5 criteria, with scores of 21 or above indicating a ‘clinically relevant level’ of PTSD symptoms (Sachser et al. 2017). In our sample, 28.9% of siblings (i.e., 13 of 45) had scores indicating ‘clinically relevant’ levels of PTSD symptoms. All siblings were reported to exhibit at least some PTSD symptoms on some occasions based on the psychometric measures completed by their parents. Sibling PTSD symptom levels were significantly correlated with parent ratings of temper outburst severity (rs = +0.334, p = 0.025) but not with ratings of food problems severity (rs = +0.239, p = 0.114)."

Our new study on families living with #PraderWilliSyndrome was published today: onlinelibrary.wiley.com/doi/10.1111/...

"Anxiety, Depression & Stress in Parents & Siblings of People Who Have #PWS: Morbidity Prevalence & Mitigating Factors"

We found v high pathology in both parents & siblings

PWS gene expression in umbilical cords predicts prenatal and early postnatal growth, with sex differences in growth rates.

#Meded #SoMe4PedSurg #PraderWilliSyndrome #GeneExpression #Infantil

link.springer.com/article/10.1...